Suspected endometriosis/results of RE appt

formerwigirl · July 2013

Hey all,

You ladies have been wonderful through this whole process so I thought I'd give you an update and ask for advice yet again. RE appt was this morning and she seems nice enough. She reviewed all of my tests results/medical history and told me she suspects endometrosis. She said she can't be sure unless she does a laproscopy but that either way it wouldn't change her course of action. She has ordered a bunch more blood work to verify if I am ovulating, genetic testing, etc. She has said my official diagnosis is unexplained infertility and that after all the results come back she is wanting to start me on Letrozole with Ovidrel w/IUI. Does this sound about right? I am all for being aggressive and just getting this going. That being said now to figure out if I need to do the laproscopy. She said it only increases my chances of getting pregnant by 6-10% and the endometrosis could come back. I am really leaning towards not doing the surgery and going ahead with treatment. Any advice or input? Thanks again everyone for everything. Scared but ready to get this journey going.

1Baby4Me · July 2013

Wish I had advise for you. Good luck with your new journey. I hope it's a short one.

gsancho · July 2013

It's always a hard choice to make b/c there isn't really a right/wrong answer. But I would say it depends on how many symptoms you have and how much your insurance covers. In my situation, I had a number of symptoms, I have a family history of it, and my insurance covered most of the surgery (but IUI is 100% OOP). So for peace of mind, I felt better having the lap to give the RE a chance to get a good look at everything, before I started spending a lot of money on IUIs. But I've known others who had some coverage on IUIs and opted to get a lap at a later time. Good luck!

RunCC37 · July 2013

I can definitely relate to your conundrum. I had to make the same choice not too long ago. At first, I thought, if it's not going to change the course of treatment, then why should I waste a cycle doing to do the surgery? But after several weeks of careful thought, my DH & I decided to do the lap. The bottom line: you have to make the choice that works for you, and only you and your DH can come to that decision. Feel free to check out my blog (clicky in my siggy) or PM me if you want to see my thought process leading up to our decision. And best of luck to you!!!

ETA: This blog post in particular outlines my thought process for our decision to do the lap: https://runninganddreamingfortwo.blogspot.com/2013/07/clarity.html

Benilulu · July 2013

I agree, it is totally a personal decision. I decided to do the lap because I had several symptoms and I'm glad that I did. I wanted to do all possible testing before doing IVF, regardless if it gave me better odds. For me, I just wanted a diagnosis as well as to know I did all I could before IVF. They found moderate endo around my ovaries when I had the lap in May and suspected this was causing my infertility. Still no luck TTC, but I guess the way I see it is that it can't hurt to do the lap.

badrianne · July 2013

You story sounds similar to mine. The only thing left of rule out is endo and my RE only recommends the lap procedure for help with pain because it will only help one in 30 women get pregnant. Also he said his treatment wouldn't be any different. So we didn't have the lap. Also, I found this video https://www.centerforhumanreprod.com/endometriosis_infertility.html

My first IUI was with Letrozole with Ovidrel trigger too. It was a BFN but I had a good response and 3 mature follicles. I say go for it.

Milagros315 · July 2013

I'm sorry that you're dealing with this. It's a really difficult decision because it seems like there is not right answer.

My doctors have suspected that I have endo for awhile now and I finally decided to have the surgery before we move on to fertility treatments. We made this decision because all of my other tests were normal and my H's SA was great. My doctor feels that IUI really isn't a good option for someone with endo and no sperm issues. Most of the research I've done seems to back this up, so I agreed to have the surgery. I have no idea if the surgery will help at all (or if I even have endo), but I need to do it so that I know what's going on before we put all of our money and emotions into other treatments. After surgery, we're hopefully going to try medicated IUI because my doctor thinks I might also have a problem with poor/weak ovulation.

Keep in mind that even though a 6-10% increase sounds really small, it's considered significant in this case. Most studies indicate that someone with endo only has a 2-10% chance of getting pregnant on their own each month. 6-10% more than that is still low, but it's much better than 2%!

Like I said, this was a really tough decision for me to make. I am in no way suggesting that I made the "right" choice or that you should do the same thing. I just wanted to share some of the things that helped me figure this out. Good luck making your decision!

sueann911 · July 2013

I had a Lap in January to remove stage 2 endo and a paratubal cyst. I went ahead with the surgery to see how severe the endo was and it also killed two birds by clearing out my tubes.

If yours isn't severe then it can significantly increase your chances. However, the lower results comes from women with severe stage 3 or stage 4. Many REs recommend going to IVF with those results.

For me, doing the lap was the best decision because it gave me a better shot to get pregnant with IUI. IVF isn't an option for us. If it was then I would have skipped the other treatments and went to IVF since it bypasses any problems that the endo causes.

Yes that treatment sounds right. Some women start out with Letrozole aka Femara and TI but moving into IUI first isn't unheard of since oral meds and TI have a conception rate of less than 9 percent in some studies.

rox825 · July 2013

Like many PPs, I'm in the process of making this decision now and have decided to do the lap after 2 IUIs, then try on our own and 2 more IUIs if needed after, if they find and remove anything. We want to do everything we possibly can before IVF, and after 2 years of unexplained negatives I just feel that there's something going on that's preventing success. I don't have endo symptoms besides IF, but I do have a strong family history. We did want to try a couple of IUIs first just in case, because surgery is definitely not something to take lightly and it can carry its own risks, so we wanted to make sure that it was worth it.

And like a PP said, my RE explained that the impact of having endo removed is modest but significant, with a 60% increase in likelihood of becoming pregnant. So if someone with unexplained IF and untreated endo has a 10% chance of pregnancy in a cycle, the same person with their endo surgically removed would then have a 16% chance of pregnancy in a cycle. At least that's the info that my RE gave me! And that's enough of an increase for us.

Good luck with your decision!

ttuprincess · July 2013

I agree with PP's that it is a very personal decision for which there is no right or wrong answer. I chose to go forward with the lap because I have such a strong family history of endo. (my grandmother had a hysterectomy at 26 because of endo complications). I didn't have any of your typical endo symptoms but I wanted to know what was going on.

I have been really glad I did it. I had Stage III endo. I had issues like one lf my ovaries was starting to "stick" to the back of my uterus because of the way the endo was growing. For me, the lap also helped "fix" a lot of problems I had been having but NEVER dreamed they could be related to endo such as bladder and stomach problems. So just for my overall health and well being I am glad I did the lap.

It is, in my opinion, an easy surgery with a short recovery time. They also did a hysteroscopy while they were in there and discovered I had one blocked tube.

Good luck in making your decision.

amwenz · July 2013

I had to have a hysteroscopy to remove a polyp and ended up having a lap at the same time because my RE punctured my uterus by mistake. However, it was a blessing in disguise because he was able to clear Stage 1 endo & also fix a uterine septum which we didn't know I had. Surgery is scary but I am glad that I had both because more issues were found and cleared. This whole step by step is a lot. Keep pushing:) If you're having the lap I suggest having a hysteroscopy too-many times they go hand in hand.

BettyBoop86 · July 2013

I had a hysteroscopy and laperoscopy in January 2010. I had it because my symptoms of my endometriosis were so terrible. I was not even engaged to DH at that time. I am glad I did it because my cramps are not debilitating anymore and the flow isn't like a hemorrhage anymore. So for me the surgery was worth it.

formerwigirl · August 2013

Can I start off by saying you ladies are soo amazing. I never imagined the response I got. I appreciate all of the words of encouragement and information. I think I am going to go with my gut and see about the laproscopy. First we have to see if insurance will cover it (we can't really afford out of pocket right now) and if so my heart is telling me go ahead. I am one of those A-type personalities and I want to know. Even if they don't find anything I'd rather know. I'm not really afraid of sugery, I think my DH is more nervous. I still have some blood work to do this month and plenty more research to do, but still. I am in awe and soo appreciative of everyone who has commented. Thank you all again.

Suspected endometriosis/results of RE appt

Re: Suspected endometriosis/results of RE appt

Me 33, DH 37 -- TTC since Jan'12 -- Low AMH (0.78) & endo, SA w/ low motility
IUI's 1-3 = BFN, IVF converted to IUI 4/13 = BFN
IVF 1.2: 8R 6M 4F -- 2 blastocysts frozen, FET 8/15 = BFP!!
Beta #s = 445;1,098; 9,545 -- EDD 5/2 -- Team Pink!

Choose Another Board

Search Boards

Suspected endometriosis/results of RE appt

Re: Suspected endometriosis/results of RE appt

Me 33, DH 37 -- TTC since Jan'12 -- Low AMH (0.78) & endo, SA w/ low motilityIUI's 1-3 = BFN, IVF converted to IUI 4/13 = BFNIVF 1.2: 8R 6M 4F -- 2 blastocysts frozen, FET 8/15 = BFP!!Beta #s = 445;1,098; 9,545 -- EDD 5/2 -- Team Pink!

Choose Another Board

Search Boards

Me 33, DH 37 -- TTC since Jan'12 -- Low AMH (0.78) & endo, SA w/ low motility
IUI's 1-3 = BFN, IVF converted to IUI 4/13 = BFN
IVF 1.2: 8R 6M 4F -- 2 blastocysts frozen, FET 8/15 = BFP!!
Beta #s = 445;1,098; 9,545 -- EDD 5/2 -- Team Pink!