endometriosis?

belle2678 · November 2011

I usually just lurk here... reading all of your posts has helped a lot. Knowing there are so many people that feel like I do, and can put my feelings into words is very comforting...

Today I have a question though. I have read posts about laparoscopy results, and never knew what they were about. After more than a year of treatments, with the diagnosis as unexplained, I asked a new doctor if there are any other tests that I havent had yet, to see if there might be an issue. He asked if I have every had laparoscopic surgery, and I said no. He said that 50% of women with unexplained IF have endometriosis, and if treated can conceive naturally. I am wondering WHY this was not told to me at any time in the past year... Are there any signs that one might have endometriosis? If you have had the surgery, when, in this journey, was it done? I have done numerous iui's and one fresh and one frozen ivf...

The doctor I saw wasn't my regular doctor, just the one in the office, so he wouldnt tell me if this is something I should do. He said I need to talk to my regular doctor. What would you do? Would you have the surgery if you were me???

Thanks, in advance, for your advice!

NMscubagirl · November 2011

I don't have enough experience w/ endo to answer this, but I wanted to say GL to you!

BeeBee08 · November 2011

I had no symptoms of endometriosis but I was insistent on having as many tests done as possible to determine why I was IF. After more than a year with my RE and 9 IUI's I finally had the surgery. I have stage II endo and it was all removed. I am still not pg and I still have to move on to IVF. In almost ALL cases of endo, IVF will negate any negative impact that endo has on your fertility. If you think you're done with IVF, then you might consider going forward with it so that you have a chance of conceiving on your own if you do happen to have endo. You are not likely exhibiting any symptoms and that's why they haven't suggested it, along with the fact that you were ready for IVF.

As far as symptoms: painful periods, long periods, painful bowel movements during your period, painful sex, ummmm....I don't know anymore since I didn't have symptoms either. I will say though that since having the surgery done I have more pain during my periods than ever before. I wish I didn't do it. I have also heard that for people with mild to moderate endo, removing the endo will increase their chances of conceiving on their own significantly (again, this did not happen for me).

Good Luck with whatever you chose to do!!!

cad828 · November 2011

Hi there, Endo is my diagnosis. I was diagnosed 2 years ago after suffering from very painful periods my whole life. I finally insisted on having tests done through my OBGYN. I ended up having lap surgery & had several cysts removed which is how I was diagnosed. Unfortunately there is no cure & the only time it subsides is when you're pregnant or on birth control. We started "really" TTC right after my surgery. After a year of trying & nothing we were referred to our RE. He suggested IUI or IVF & we decided to go right to IVF to give us the best possible chance of success. I have been told that even women who have severe cases are able to get pregnant naturally but of course everyone is different. If you've ever experienced really painful periods or any other symptoms it might be worth having things checked out. You wouldnt have lap surgery right away, they only do that once they know there are cysts present. You'd most likely have an ultrasound to start. Hope this helps & good luck with your journey.

AmCheri · November 2011

Hi there :-) I'm glad you're posting on the board!

I've had a long history of endometriosis symptoms. Plus, it runs in my family. My IF diagnosis is DOR/POF, but it's highly likely that I have endo as well. My RE and OB/GYN before him were both aware of the symptoms. Both offered a lap, but neither insisted on it or even recommended it.

The problem with endo (among other things), is that there is no "cure." They can clean up the tissue, but it will grow back. The process of IVF should circumvent any difficulty you may be experiencing with respect to conceiving as a result of the endo. In that regard, a lap seemed unnecessary to me. The classic symptoms and family history are enough for me to know that's my problem, and the doctors haven't disagreed. There being no cure, I didn't see the point of the diagnostic lap. We went straight into IVF and I haven't regretted my decision for a minute.

It's an extremely personal decision. This is what was right for me, but you may properly decide otherwise for you. Good luck!

belle2678 · November 2011

thank you so much for your responses!

ycristina84 · November 2011

Hello! I'm another endometriosis gal! I was diagnosed with the most advanced and aggressive form of endo, it's stage IV. They were able to diagnose me through ultrasound due to the size of the endometriomas and the amount of cysts I had. About 2 months later I had the laparoscopy to remove it, but most have to go through this to really get diagnosed.

The process to get to find out what was wrong with me was not simple. I have had extremely painful periods (where I blackout or throw up), extremely painful bowel movements during period (turns out my ovaries were stuck to my rectum!), painful sex in certain positions, weight gain, loss of energy and sex drive, and constant bloating. My original doctor ignore all of this and told me that I had a low tolerance for pain and that all women suffered like this on their period. I trusted him for years till I could no longer stand it and we had been tic for 6 months with nothing. I just KNEW, for years, that I would have trouble conceiving. Within 2 days of seeing a new obgyn, I had a diagnosis. I met my RE quickly, and we had a plan in place.

I had my lap and hysteroscopy and they cleared everything out successfully, but here we are a few months later and my endometriomas are coming back. Endo is a *** that will not leave you alone until you get pregnant or start birth control. Our only option is IUI, then IVF. In theory, you CAN get pregnant naturally with Endo (Celebrity Padma Lakshmi got pg naturally with stage IV after 40!) but it's difficult.

I wish you all the luck in the world and hope that you do not have endometriosis, because it super sucks. But the lap will rule out a number of things, so it'll be worth it!

missjul61 · November 2011

I was originally unexplained and had zero symptoms for endo so my Dr didn't recommend a lap until I had 3 unxplainable failed IUIs. Since we had to pay a large chunk OOP since the surgery would've been purely exploratory, we decided to forgo it and put our funds toward IVF. However after my 1st IVF resulted in an ectopic, I had to do a lap anyway and lo and behold, they discover stage 2 endo.

GL with your decision.

BeeBee08 · November 2011

cad828:
You wouldnt have lap surgery right away, they only do that once they know there are cysts present. You'd most likely have an ultrasound to start.

I say this with utmost respect, but this statement is incorrect. I did not have any cysts, as is the same with lots of women who have endo. An ultrasound can't diagnose endometriosis and an absence of cysts (or symptoms) doesn't mean anything, it can only be diagnosed after a lap. I went forward with the lap having absolutely no reason to believe that I might have endo besides my unexplained infertility. Good Luck!

ycristina84 · November 2011

BeeBee08:
cad828:
You wouldnt have lap surgery right away, they only do that once they know there are cysts present. You'd most likely have an ultrasound to start.

I say this with utmost respect, but this statement is incorrect. I did not have any cysts, as is the same with lots of women who have endo. An ultrasound can't diagnose endometriosis and an absence of cysts (or symptoms) doesn't mean anything, it can only be diagnosed after a lap. I went forward with the lap having absolutely no reason to believe that I might have endo besides my unexplained infertility. Good Luck!

I agree, lots of endo cases have no cysts or symptoms and they will do a Lap anyways without those to rule out endo. BUT, yes, they do in fact diagnose through ultrasound in some cases (like mine) where you could clearly see my ovaries behind my uterus, numerous endometriomas, and large cysts. But most cases can only be diagnosed through surgery. (It's an easy surgery, btw, so dont be scared!) Every case is different and unless you are talking with an RE people on the Internet can give you thousands of opinions and experiences that could be conflicting with what your doctor is telling you. It doesn't mean your doctor is wrong though.

amandaleigh1 · November 2011

I had surgery after my HSG showed evidence of pelvic adhesions and a possible blocked tube. I had some symptoms that made me suspect endo. I has surgery in hopes that it would improve my chances for conception naturally. After surgery, I tried au naturale for 5-6 cyles with no luck, and I think that even though I was cleaned up from most of my worst endo that it was still around enough to keep me from getting pregnant. That, combined with my age, pushed me towards IVF faster than others may have gone. Prior to IVF, I had never been pregnant, ever.

So, even if you get a diagnosis endo and have it removed via surgery, it is not always a given that it helps restore fertility. It can't hurt, but it is no guarantee. I actually think IVF is more of a guarantee than surgery is. Endo associated infertility does not a factor in the success or failure of IVF as far as I know.

belle2678 · November 2011

Thank you! I was actually discussing this situation with my parents today... and I said that idk if I have the patience to try again naturally for months after the lap (if it even turns out that I have endo)... I have to talk to my husband, but he always says whatever I want. I'm just having a lot of trouble with this decision, so all of your advice has been very helpful!

tketterm · November 2011

Belle

If you research Endo you will find that the adhesions and implants actually release a chemical that will make you miscarry. I have stage 4 endo and have ad multiple laps, but I also have a beautiful dd thanks to IVF and a strict diet.

I have the Endo gene and yes it is hereditary. Diet and vitamins and minerals are very important when TTC if you have endo.

My best suggestion is to find and RE who has an affiliation to the National Endometriosis Board. There is also a great book written by Dr. Mills called Healing Endometriosis through nutrition. I gave up gluten, dairy, and sugar six months prior to my IVF cycle and started having acupuncture and regular adjustments. IVF cycle 1 was a success and now I am starting a FET cycle today. (hence back on the bump)

davidandheather · November 2011

Here is a great resource on endo. I don't see how a lap would hurt anything. Although it could leave scar tissue.

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