Diagnosed w/ severe endometriosis but no symptoms

I just had tubal ligation, Dec 23, 2011, I had an ovarian cyst that burst during surgery causing some damage to one of my tubes..no big deal since I was thinking of having a tubal anyhow.the other ovary was fine, but heavy scaring around tube, so the tube was removed, leaving both my ovaries intact... Having had 2 c sections (no vaginal deliveries at all) I figured its just scar tissue from c sections..

However my surgeon said they found severe endometriosis and recommend I do a hysterectomy. But after researching and reading I have absolutely no symptoms of having severe endometriosis.. My twin sister has severe endo and she literally is like rolling on the floor in pain during her monthly, has wild PMS, and has had alot of issues getting pregnant..and basically has dealt with alot of pain from it, cramping, heavily blood flow, wild mood swings, and her cycle is all over the place.. ..

I, on the other hand, cycle like clock work, occasionally a heavy flow, but typically my periods last 3 days, with a day or two of minor spotting. I have very little if any cramping, suffer no PMS or anything remotely hormonal.. and I have no major pain.. just a little discomfort occasionally from a typical period.. My lower back will hurt more right before I start and during my period, and I tend to get anemic so feel chilly just before I start and during my periods.. Once Im done flowing IM back to normal..

Im wondering why I would need a hysterectomy for something that doesnt bother me in the least? And my doctor is saying a 3 MONTH recovery time.. Yet everything I read here says 6 to 8 weeks... Im really wondering if I even need a hyst at all...


IM considering getting a second opinion but wonder just how soon can I have another dr look at since IM just barely 2 weeks out of surgery. Also I am currently on my period, which to be honest scared me silly cuz IM not due for til around the 19th, I thought I injured myself doing too much, but Dr says its fine that having the surgery just has my hormones out of wack, so not to worry.. No big deal to me, and its a little bit heavy flow, but nothing major, no real pain, nothing out of the ordinary. No moodiness, no nothing. Just typical period for me... So again I have no concern for that.. Except for the fact if I had severe endo I would think Id be experiencing at least SOME of the symptoms...

How would another Dr check for endo without adding more injuries to my healing body?

Thank you in advance..

I don't think I would have a hysterectomy if you are not having problems. The first thing is that it will not "cure" endo. I had one and still have endo problems. I only had it because of 24/7 pain and Lupron not helping at all after 3 1/2 years. And the problems because of the hyst are pretty long for me. New life threatening allergies, flareup of Crohn's, problems with IC and bladder spasms, chronic pain, pelvic pain,etc. So I would not do it unless there are a lot of problems. For one thing, my doc had me on birth control for years to control it. It worked really well for a long time. Definitely get a second opinion. They can look at the test results and give you their opinion. It sounds like you are doing well.

After spending countless hours reading thru this site, I am definetly going to get a 2nd opinion.. I literally have NONE of the symptoms that would point to endo... Matter of fact if I hadnt have had the cyst/tubal I would never have gone in and I would be happy go lucky same as before.. Im beginning to think my Dr is majorly over diagnosing... I have no pain, no heavy flow, no anything that would indicate any kind of a problem. I have literally never been to the Dr for any kind of "female" problems what so ever in my entire life... This whole being diagnosed as having severe endo just does NOT match up... IM so glad I was directed to this site, without being able to read all the info here I probably would have let them go ahead and do a full hyst without ever questioning it.. But NOW I just cant see letting them take everything out when as far as my body is concerned everything works just fine... Thank you for having such an informative and woman friendly site ...

I don't have the daily pain that a lot of endo gals have, but I had a lot of issues with my surrounding organs (bowel, bladder, diaphragm). After meeting lots of women on different sites, I am often amazed that with the amount of endo that was found I am not worse off. Endo really affects each person differently, but ultimately you know your body and your gut will tell you what to do. It feels like docs throw around the suggestion of a hyst like it's having a tooth pulled, argh!! Glad you found some guidance here

Hi, sorry you were diagnosed with endo but very happy you are a symptomatic. Watching your sister, you are experienced in the agony endo can create so it's pretty certain you are not stoically enduring abnormal symptoms. Traces of endo can cause extreme grief while extensive endo can exist without problems. If you are not experiencing symptoms the next questions would be whether the endo is silently threatening you. For instance a bowel obstruction. Did the surgeon biopsy samples to confirm endo? How much was removed during your ligation? How experieced is the doctor in endo removal during the next surgery? Did he mention bringing in other surgeons to assist with removal of remaining endo on bowel or urinary tract?
Guess my short answer is get a second and third opinion. Your doctor is concerned for you and the 3 month recovery is within reason, your body is healing for a year or more post op. the 6-8 week time frame is for soft tissue healing and safety not a reflection of how you may feel.
Hysterectomy is not a cure for endo in the absence of cancer it is an elective procedure of last resort. Some women seem to sail through the hysterectomy surgery, other are left with lifelong battles related to consequences of the surgery.
Unless your doctor has additional information creating a safety concern, urgency is not a factor. Take the time to investigate your options, decide what treatments are best for you and when. To my knowledge only removal of all endo implants is considered effective. If you have no symptoms is such an invasive procedure the best choice?? Hormonal treatments can be grueling with mixed results and possible permanent side effects. Each treatment has unique pros and cons. What is right for some is not right for all.
Learn all you can and Develope a proactive not reactive plan. When you decide to move forward with treatment you will have confidence in your decisions. You may also find solutions for your sister.

Wow, your are like totally lucky not having any symptoms. The pain is excurciating(sp) and is one reason I had my hyst. I had my right tube and ovary removed in 2004 due to endo. It is a total alien, I learned after my hyst. the endo had attached itself to my colon on the left side. I was pain free after having the first surger in 2004 but knew it had come back due to the pain I have lived with the past year or so. Keep a check on it though even though you don't have the pain or symptoms. As for the 2nd opion, would prob. be the best thing you ever did.

Thanks for all the replies... IM going to be question my Dr and get another opinion as well..

I can understand the whole unknown threat to my body etc.. But for what this doc is describing I find it really hard to believe that I have this.. I might be wrong, but Id feel better hearing from another Dr...

I just would like to put a bit in here..I recently joined this forum and recently found out that my ureter on my left side was blocked. In turn I am losing a kidney...due to SILENT endo. On my ureter. (Which is rare so I've read)up until 6 months ago I had no pain. Light periods like you. I am still questioning having a hysterectomy. Point is I would find out locations..can it threaten internal organs etc. I am also getting a 2nd opinion. It is a smart idea Good luck to you!

I would get a second opinion for sure but like a previous poster said, endo is tricky. You can have stage IV with no pain and stage I with excrutiating pain. If it is endo I would have as much removed as possible to prevent future problems, but wouldn't have a hysterectomy unless it was affecting my quality of life drastically.

Definitely go for another opinion. I just had surgery with an endometriosis specialist for endo and a hysterectomy for adenomyosis. When I started having problems it was a total shock to me because I too had always been really normal and regular with my cycles. Over the course of 3 years I went from being totally normal to being in incapacating pain. Unfortunately, by the time I went in for surgery my endo was very severe and was affecting my appendix, colon and bladder so there definitely is a risk to your other organs. That being said, I do understand not wanting to have surgery if you're having no symptoms. Maybe you can find a doctor who can help monitor it for you and try a wait and see approach? Good luck with everything!