New here, but years of problems!

Hi all, I am new here, and new to posting in forums of any kind. I learned of this community after concerns of cancer were mentioned at my last Dr's appointment and I took to the internet to find somewhere, anywhere, I could find women who could relate to the anxiety and stress of such gynecological issues. There were some very kind women in another forum who suggested I look here.

I just turned 29 on October 30th and am scheduled for my FIFTH operative laparoscopy (and hysteroscopy) tomorrow afternoon within the past 6 years. It will be my third operative lap since May of this year.

First lap was in 2011. It was then that I first learned of, and was diagnosed with endometriosis and adenomyosis. It was also the first time I was told a hysterectomy would be my only "cure." And not even entirely. I was a newlywed and intent on starting a family and so instead opted for 3 rounds of Lupron. I made it through 2 before deciding the side effects were too much. I became pregnant after 3 cycles of Clomid and delivered my wonderful little boy in 2012.

6 weeks later it was recommended I have the Mirena inserted, and so I did. After recurrent, benign ovarian cysts ranging between 2cm and 5cm, I was placed on an oral contraceptive in addition to combat the cysts. My menses ceased to exist a few months after Mirena insertion. The pain was something what was just a part of me by this point, but became worse and warranted my second lap in 2014. Again, a copious amount of endo was found and removed and I was on my way hopeful that this saga was over.



I felt decent most days until the beginning of 2016. By March I was absolutely miserable. It was May when I couldn't take it anymore and made another appointment. Fatigue, extreme abdominal bloating, could hardly eat because I felt TOO full after just a few bites, urgency to urinate...you know how it goes. I was sent right from the office to the hospital where a transvag revealed an 8cm complex cyst with multiple septations, and vascular flow within them. This leads to emergency Lap for removal of the cyst. Hysterectomy is discussed for a third time but I am stubborn and have my mind set on just one more baby. Cyst was ruptured during removal and cyst contents were spilled into my abdomen. Cyst contents were then aspirated to the best of their ability, and sent to pathology along with pelvic washings and the cyst wall. Kept the ovary, and no signs of malignancy, YAY! Except I learned later, not so yay, because if there were any sneaky lingering cancer cells in that cyst, there's a chance they weren't asprirated and now have free range.
Next day I had complications and was taken by ambulance to a larger hospital because I had lost so much blood both internally and through one of my incisions. Then comes emergency lap #2, lap #4 overall, where they removed 400cc's of blood and clots from the posterior cul de sac. I go home after 2 days and hope for the best. IUD strings couldn't be found throughout all of this, but IUD appeared to still be in the right place.

And now here I am in November, scheduled for lap #5 tomorrow. After no menses for 4 years, I suddenly had bleeding for a few days in August and then like clockwork again in September. The pain...the symptoms...unbearable and relentless. Finally make an appointment in Oct with a NEW gyn after the disaster that was May. He asked a lot of questions about family cancer history (Maternal aunt had early onset breast cancer, many years later diagnosed with Acute Lymphoblastic Leukemia, and later passed away from complications. My mother passed away from brain cancer in 2003.) Expressed cancer concerns considering the spilling of the cyst contents, characteristics of the cyst, symptoms, etc. Still couldn't locate IUD strings. Said my cervix was extremely inflamed. But other than that was a man of very few words and just said we need to go right to laparoscopy. I'd have questioned, but since I want this dang Mirena out anyway, and it is LOST, it has to be surgically removed anyway.

Even though I just typed a novel, I'm sure I have overlooked and left out many small details that could potentially important info when put together.
I'm not sure what I'm really even looking for here I guess. I am just so tired of dealing with it, but again, still, adamant in having one more child!! Depending on what is found and done tomorrow, we are hoping to begin trying for another miracle babe once it is safe to do so. And then? I'm done! I'm tired! I'm tired of my pelvis being painful and feeling heavy and full. I'm tired of the recurrent cysts, the surgeries, the problems!

I am prepared with a list of questions to discuss before/after surgery tomorrow. But my anxiety is running strong in the meantime!!!

Has anybody else dealt with years of problems? How did you handle it?

Feel free to ask for info that you feel is important to have before giving advice. I'm overwhelmed and lost!

How did surgery go? What was done and what was found?

I would be hesitant to have so many repeated surgeries. For one, it increases your risk for adhesions. Two, having anesthesia that many times is a bit risky.

Have you considered seeing an endometriosis specialist? It could save you many repeated surgeries. My surgery in 2008 with my endo specialist was my last.

Surgery went really well! I feel the best I ever have following the previous 4 laps, and made it out of there with only two incisions instead of the usual 3-4. Surgery was necessary to remove the Mirena, and a cyst on the right ovary that was suspicious and not resolving on its own. The need for frequent and repeated problems, and as a result repeated surgeries, has been the driving reason a hysterectomy has been recommended. (Longstanding history of adenomyosis in addition.)

There was no malignancy found in initial pathology! So big relief there. Dr believes the Mirena was the primary source of the pain and cysts, but cannot say with any certainty why the cysts I've had have consistently shown malignant characteristics. I will go for repeat scans every 3 and then six months for the first year.

(WARNING - baby/fertility info below)

He does believe I have a decent chance to conceive and carry successfully if we try within the next 6 months to a year. I asked if I should wait for the first follow-up test or two to begin trying, to make sure problems don't return and pregnancy is safe, but he believes strongly enough that the IUD was the problem and I will be okay to try once I'm healed and we are ready. I asked what happens in a year if we are unsuccessful, and he reminded me that a lot of things can happen or change in one year, and that we will discuss our options then. But that given my history, he would not recommend the use of Clomid again to assist in conception. (Clomid was the saving grace in conception for my son.) He reminded me to be mindful of the recommendation for hysterectomy at that time, but for now to focus on healing and the positive that could result in the year ahead.

Thank you for checking in!