Is it better to have a laparoscopy (for endo) sooner rather than later?

[meduser123]

I just visited my gynecologist. He told me he'd be open to performing a laparoscopy on me when I turn 18, which is in less than 3 months. He was hesitant before that due to my young age (meaning the surgery would have to be perfomed in pediatrics) and the fact that he wanted to experiment with some other medicine first.

Before I went to this doctor, I visited several other doctors who started me on birth control (since I was 13). The birth control pills worked for a few years, but gradually began to lose effect. I've had many special occasions, trips, and final exams screwed up with horrible cramps that rear their ugly head at the most inconvenient times. I have back pain, intestinal issues, break through bleeding, and dry cramping. It's very sporadic and unpredictable. I can be problem free for a month or two, and have a horrible month of pain and other complications right after.

After I began seeing this new doctor six months ago, he started me on progesterone. Even though I grappled with some side effects, generally it's improved my symptoms immensely. Even though as of the last week or two my pain has returned as mild/moderate but constant, it's nothing I can't manage. However, that doesn't mean I want to be in an annoying level of pain for the next 20 years. I also have a primary symptom of fatigue, which does effect me on a daily basis. I used to think it was unrelated to the endo, but after radically changing my diet for the better last year and seeing minimal improvement, I've become suspicious.

Because the progesterone helps so much, my doctor tells me he's almost sure it's endo. He's confident enough to make a formal diagnosis (at least between the two of us). He would be the one to perform laser surgery. I was wondering - is it better to get a laparoscopy to treat endometriosis as soon as possible, or should you wait until you're older? The two concerns my doctor has are as follows - the buildup of scar tissue (meaning the risks may make the surgery needless), and the possibility that it won't improve because it could be deep rooted. The main benefit I see in surgery is being able to remove most (or all) of the endo before it grows too much. I mean, it's a bit like a tumor, isn't it? I would assume removing a tumor while it's still small would be easier and lead to fewer complications than removing a tumor when it's large and possibly metastatic.

I'm not quite sure what to do. Part of me wants an answer. I realize I will probably need multiple surgeries in my life - my doctor told me this himself. I don't expect the surgery to be a magic bullet. However, I'm wondering if surgery is the right choice for me at this current moment. Even though my pain is being (mostly) controlled now - with the occasional stabbing ovarian pains and waves of cramps sprinkled here and there (but not nearly as bad as it could be) - I feel like my very, very bad history of pain and the unpredictable nature of my pain means I should take this opportunity to nip it in the bud. A small part of me also wants a firm diagnosis and an answer. Is that wrong of me? All my life I've dealt with people who were skeptical of my pain and thought it was all in my head. I want to be sure this is for real, even though my doctor tells me it probably is.

Thanks so much. I'm just very torn about what to do. Should I take the offer and push for surgery in a few months? Or should I just throw in the towel and push trough the unpredictable future until I'm a bit older?

[ticked]

I have been told by top surgeons and advocates that the pill or any hormone therapy you do does not suppress the Endo, it will continue to grow regardless, it just helps stop the pain from ovulation and your period.

I had stage IV endo, had excision with one of the bests and it was really deep, was on continuous BCP for 8 yrs just had a hyster and was stage IV again and deep. This doesn't always happen and there are many variables to this disease.

It took 14 years for my first surgery and that is why mine was so deep.

you are right about surgery, some people feel better after and some don't. I had rectovaginal endo twice so my pain was mainly rectal for the most part.

[meduser123]

Thank you so much for your advice. Personally, I would love to one day be hormone free, but I'm worried this isn't an option for me. Even though my endometriosis is likely in it's early stages, I'm still doubtful that a surgeon can eliminate all of it. My doctor told me I would have to continue taking progesterone even after the surgery to limit the growths (because surgery isn't a magic fix-all solution).

This is where I'm torn though - I'm unsure if a good excision surgeon could put me in a place where I don' have to take hormones. On one side, I know the hormones help control the growth of endo, and the progesterone itself has certainly helped me with my cramps (I see a big difference in the frequency of my pain, which is great). But on the other hand, my fatigue has worsened exponentially since I started taking progesterone. My twin sister (identical) especially faced problems with fatigue when she took birth control pills, which worsened when she went on progesterone only. I have a suspicion that this fatigue may be caused by candida overgrowth, but much to my dismay, I learned that fatigue-causing candida thrives in a progesterone rich environment. Yet another reason why I would love to not be taking a hormone supplement. But once again, probably not possible because of my endo.

I like my doctor a lot (he's fairly young, but he seems to be very interested in keeping himself updated with the latest treatments - he was the only gynecologist I've ever seen who was smart enough to know that estrogen fuels endometriosis). If he only specializes in laser and I have to seek out a different surgeon I will, but I feel like I've established some trust/familiarity with this guy. I have a fear that seeking surgery from another doctor would almost be an insult (is that crazy of me?)

Thanks for your tips. In an ideal world, I would love to be able to fix my problems with endometriosis AND my problems with fatigue, but sometimes it feels like I have to choose between the two! I hoped that surgery could be a really good thing for me, but after reading the myth of how laparoscopies performed too early can cause unnecessary scar tissue and actually worsen the problem, I became scared. But after reading your story, I know I'm incorrect. I can't imagine what it must feel like to have had it progress to such a point.

Thanks again!