Severe Endo, 7cm Ovarian Cyst, 2nd Opinion?

[staceyann73]

I am 36 with severe endo. and after being on the lupron shot for 2 1/2 months I starting having right sharp pelvic pain, back pain, sciatica and my stomach had distended as if I am pregnant.  Ultrasound found a 6cm cyst last week - no pain at the time, this week with pain, cyst has grown another cm.  Dr has sent me home and wants to wait 6 wks. He doesn't want to perform any surgery due to the extensive nature of my endo and doesn't want to hurt other organs or make the problem worse. (My Dr. is a GYN/ONC. that specializes in Robotic Surgery)  He said that endo. surgery is harder then cancer removal as its like cement that has been poured into the pelvic cavity and needs to be chipped away.  Damage to other organs or intestines is possible so unless I want a gastric bag, I should not have surgery.

I am very concerned.  The Dr. really didn't look into my distended stomach (I look 6mths prego) and just didn't beleive that my vaginal bleeding would be due to the cyst?? I shouldn't have gotten a cyst on Lupron, I thought.  I am worried about Cancer and what would be causing the bloating.  Any idea's, advice, input, info would be SO VERY appreciated.

[Meedychesh]

Your situation sounds similar to mine, I had 7 cm cyst and deep endo and after a laparoscory in dec the surgeon just stitched me up without doing anything as he said it was too complex. He ran me through all the possible complications ( bowel damage, bladder damage or full hystorectomy despite still wanting kids), and told me to have 3 months to think about the risks. His advice rather than risky surgery was for me to go as long as I can (he meant years) on stronger painkillers (which would mean giving up work and going on benefits), but after 3 months I still opted for the surgery with the risks. I had the op last month as the endo and cyst pain was so bad and constant it was worth the risk. In the waiting time the 7cm cyst had burst and just two smaller cysts remained which made the surgery easier, and all the endo removal went ok. There were small comlications during surgery and it took longer than they expected but they managed to do it without any permanent damage. I don't know whether it was just luck or that the surgeons prepare you for every eventuality incase things go wrong but I would recommend asking for surgery. I would have rather had the surgery and had to have a bag for the rest of my life and have endo surgery every couple of years than put up with the endo pain, but I'm so happy it went without a hitch.

[staceyann73]

I would suggest the Lupron Shot first.  Its not a great option, thats for sure, but not a perminant option.  The Dr told me to try the Lupron for 3 months - if the pain goes away 100%, then you know that the pain is from your ovulation/cycle alone and if you were to have a hysto, then your probability for pain releif is very good.  But, if you have the Lupon shot and do not feel a great amount of releif, well, then chances are that the endo has spread onto other organs and the scar tissue is creating alot of pain as well, at that point you have to decide what you want to do.

Hope this helps.

~ Stacey

[brighteyeslou]

I to have endo and have had it since 91 and I have reached my limit with pain as well the Dr wants to try the shots and the name of the shot is Lupron depot.He said it was my choice either hyster or shots .I am so confussed can't decided .Shots has side effects and will it even work .What is your input ?
I hope you soon get your answers and feel much better I really know how you feel.
                           brighteyes

[Mimi81]

I had excruciating pain from the endo for three months before my doctor decided on laparoscopy. my endo was little, but i suffered so much, especially the two months before my surgery. I never want to experience something like that again, so I am on the pill for six continuous months. I also had small cysts, like 2 cm, i guess they went away on their own. i don't know why your doc doesn't want to do surgery, i had a friend who had severe endo and fibroids and she had them removed by laparoscopy. maybe you want to get a second opinion. it never hurts. I have never tried Lupron, my doc said i didn't need it. I suggest you get a second opinion. any surgery has its risks. mine went well, the healing process depends on the person, it took me 12 weeks before the incision pains went away, but you need at least 4 weeks off and rest before you're active. i hope you feel better!

[staceyann73]

Oops, forgot to mention that when my pains came on I started having vaginal bleeding.  Hadn't had any bleeding since 2nd week on Lupron.