Endometriosis

[krchelle]

After going through the removal of my large cyst last May and suffering through pain since then, I finally have some answers.  I had an exploratory surgery on Friday and was diagnosed with Endometriosis on my uterus, ovary and bladder.  My doctor said that was the cause of my pain and the severe bloating.

I posted this on the endometriosis forum, but then thought I would post it here as well to see if any of you ladies have also experienced endometriosis and have any insight to add:

"I had my exploratory laparascopy yesterday.  I have endometriosis.  It is on my right ovary (I don't have my left one), bladder and at the bottom of my uterus towards the cervix.  Other than that, I have very little information.  I didn't get to talk to the doctor.  I was the last surgery of the day and in recovery for quite a bit-I had trouble waking up, so he was gone before I could talk to him.  He did talk to my boyfriend and told him that and that he would be putting me on a series of 6 month injections.  I assume he was talking about Lupron, because he had mentioned it before the surgery.

I have a follow-up with him next Tuesday, so I will be able to find out more...like how serious it was, etc.?  I've started a little research on Lupron, but I am still a little foggy on meds and haven't gotten into it too much.  I really don't want to just start this medicine without knowing more about it and finding out other options.  

If you have been on Lupron, I'd love to hear from you.  Did you have side effects?  How serious?  Did they subside?  How long were you on it?  Did it work?  Did the endo come back when you went off the meds?  How soon?  Can you get pregnant after Lupron?  or is it best to try to get pregnant before?  (I'm not even sure if I can, from what my boyfriend said, it sounds like the doctor thought it would be difficult for me)

Any thoughts would be appreciated. "

Thanks!

[old_before_my_time]

Adhesions that form after surgery can cause pain too. And, yes, it would seem possible for endo to be aggravated by pelvic surgery just as cancer cells can be spread during surgery. And it is hard to differentiate pain and discomfort of GI issues from gyn issues.

[krchelle]

I never suspected endometriosis until a few months ago.  However, looking back, it would explain a lot.  I did have heavy, painful periods, but just thought it as normal for me. I also had a lot of GI issues that always seemed worse around my period. I have been on Depo for the last 3.5 years-for birth control, not for the cysts, etc., so my period symptoms were lessened significantly.  I did sometimes still feel crampy like I was going to start, but had no actual periods. I was also diagnosed with Gastroparesis and IBS a few years ago, so I'm sure I wrote off some endometriosis pains as being GI related. It wasn't  until after my cyst/ovary removal last year that I really started noticing something was wrong. I'm not sure why...maybe the surgery irritated the endometriosis? Who knows?  Hoping to get relief soon, but I'm not wanting to do anything drastic just yet.

[old_before_my_time]

Yes, why pull out the "big guns" when something less drastic will possibly work. How long before the cyst was found were you having pain and have you always had pelvic pain to some degree since you started your periods or at least by your late teens or early twenties?

[krchelle]

Thanks for your response.  I honestly don't know if he was able to remove the endo or not. I assume he did, but I didn't get to talk to him and my boyfriend just didn't know what questions to ask. I will know more next Tuesday.

I will continue my research on the Lupron, but right now, I'm leaning toward refusing it and trying birth control longer.  I was on Depo for a few years (for actual birth control)  and just very recently switched, so I'd like to see if this new one will work. I'm worried about the side effects of the Lupron and I have a strong family history of osteoporosis.

I may look into seeing a specialist as well, but being from a small town, I will have to travel, so that will have to wait for summer when I have some time off. I've already taken off way too much time as it is.

[old_before_my_time]

Hi krchelle. I am sorry the removal of the cyst (and your ovary if I recall) did not resolve your pain and that you have now been diagnosed with endometriosis.
Did your surgeon remove the endo?

I do not have endo so cannot speak from personal experience. From everything I have read and based on my connections with women with endo, Lupron does not always help and the side effects can be debilitating but not all women have the same response. Also, since the side effects can have lasting adverse effects (such as bone loss) it is not recommended that women be on it for more than 6 months or so. And oftentimes, the endo just comes back after stopping the injections. Birth control helps many women but it can take a bit of trial and error to find the right one.

Excision of endo implants by an endometriosis specialist can sometimes give longer term relief but not always. There is a lot of information out there on some endometriosis websites. Hopefully, your research and connections with other women who are suffering will lead you to an effective treatment(s). Best of luck to you!