Endo and IVF? (re-intro and ?, and loooong)

MsAmandaPants · November 2013

Hi everyone! This is probably going to be a post and run because I am headed to an appointment, but I will check back when I get home.

I am a regular over on TTCAL and I sneak over here every now and then to ask you smart ladies the occasional IF question. Now that I am considering more aggressive fertility treatments, I may start spending more time over here, if you will have me.

My history is in my signature. For those on mobile, I’ve been TTC my first since Feb 2012. We got lucky right off the bat (in hindsight this was clearly a lucky, lightening-strike kind of fluke). Sadly, that pregnancy ended in a MMC and D&C at about 6 weeks. We tried again for many months and got our 2^nd BFP in Nov. 2012. Unfortunately, that ultimately was determined to be a complete molar pregnancy and I was benched for 6 months and had to go for routine monitoring. My RE proceeded with testing during this phase and diagnosed me with auto-immune thyroid disease/hypothyroidism, DOR/POR (AMH .29) and endometriosis (although the latter has not been confirmed with a lap). I’m also AMA (36). After coming off the bench, we started fertility treatments and I have now had three failed “minimum stimulation” (5mg letrozole + Menopur) IUI cycles. Surprisingly, I did have a decent response to the meds with 3,4 and 6 mature follicles respsectively. Still no BFP, though.

My RE is now suggesting that we move to more aggressive treatments. He thinks I have a fertilization or implantation (uterine lining is not terrible, but not stellar) problem. He thinks moving forward with IVF or controlled ovarian hyperstim + IUI is the way to go. The endo diagnosis is a relatively new one and one that I only just broached with him last cycle. If we pursue IVF, he does not think that I need a lap. If we do anything short of IVF, he thinks we should pursue the lap.

I realize that I am in a gray area here with regards to best practice. The jury seems split on whether a lap is good for someone with DOR (it can damage ovarian tissue even further and can even increase scarring), but it also seems split as to whether it should be pursued prior to IVF. My RE says that success rates are not all that different in patients with untreated endometriosis, but I also see information to the contrary that indicate that removing endo prior to IVF leads to better results (as endo can interfere with implantation and embryo growth).

It is hard making this decision blind. If I knew my endo was really minor, I would feel more comfortable just going with IVF without the lap, but I have no idea if stage 1 or stage 4 endo.

Any of you ladies that have dealt with endo + IVF. Did your RE recommend a lap prior to IVF? Bonus points if you happen to have DOR thrown in the equation as well. Any and all experience and insights welcome!

And for those of you that read that novel, a treat:

kz's_girlygirl · November 2013

I have endo- my last lap (which was done to remove a cyst and found the endo, surprise !) was 2 years ago and my RE says the IVF bypasses the endo so I don't need another one before our next cycle. But- if you think implantation might be an issue it might be worth talking about more with your dr. My issue is fertilization/borderline DOR (history of POF in my family).

Lm92599 · November 2013

I have DOR but don't have endo that I am aware of so I cant offer you any help on that, but I just wanted to say hi and welcome. I am new here. Good luck to you.

Benilulu · November 2013

I found out that I have stage three endo after having already done 4 IUI's. We decided to do two more IUI's after the lap, both unsuccessful. The lap can sometimes help with IUI success but my re told me as well that IVF bypasses endo. We are now in the middle of our first IVF. Good luck.

beachy6 · November 2013

Welcome! I would imagine that the idea of endo, at this point is a suggestion/possibility because endo cannot be diagnosed any other way than by sight through a lap surgery and then the lesions sent off to be biopsied. So, one reason for you to consider the lap would be to see if you really do have endo or not.

But, you are right about there being a differing opinion on whether to lap or not before IVF. My current RE feels that it isn't necessary because IVF bypasses the issues and a lap can't fix implantation problems. However, if you are doing more iui's then a lap to remove the endo would be beneficial. The endo creates a toxic environment and it doesn't allow the sperm and egg to "talk" and find each other. So, with iui, it would be problematic. However, with IVF, no big deal.

Personally, I only have my laps to control pain every couple of years. I've never had it help with fertility issues, so I happen to agree with my RE about it not really mattering.

If you have any endo questions, please feel free to ask! It's a terrible disease and can be difficult to handle since we all look so normal on the outside, but feel so sick all the time. Life in pain can be pretty depressing and it's nice to know you're not alone!

I wish you the best of luck!

Edited to add: There is also a lot of research to support that stage 1/2 don't impact fertility, where 3/4 have a negative impact on fertility. So, it would be good for you to have yours staged just so you know what exactly you're dealing with. I feel that with infertility issues, being educated ourselves is the most important thing so we can fight for what we want/need and be educated when talking to our docs. Sometimes, it feels like we've been in the trenches for so long that we know more then they do

MsAmandaPants · November 2013

ThoseThreeWords said:

Welcome (again?) to the board. I have a crummy amh similar to yours...but no experience with endo. GL!

Sorry you are in this crappy club as well. Good luck to you, too!

MsAmandaPants · November 2013

kz's_girlygirl said:

I have endo- my last lap (which was done to remove a cyst and found the endo, surprise !) was 2 years ago and my RE says the IVF bypasses the endo so I don't need another one before our next cycle. But- if you think implantation might be an issue it might be worth talking about more with your dr. My issue is fertilization/borderline DOR (history of POF in my family).

Thanks for weighing in. Good to hear another RE that says IVF bypasses much of the endo issues. I definitely have egg quality issues due to DOR as well. I'll ask some good follow up questions about the implantation issues. GL to you!

MsAmandaPants · November 2013

Lm92599 said:

I have DOR but don't have endo that I am aware of so I cant offer you any help on that, but I just wanted to say hi and welcome. I am new here. Good luck to you.

Thanks for the welcome! Fingers crossed for your upcoming FET!

MsAmandaPants · November 2013

Benilulu said:

I found out that I have stage three endo after having already done 4 IUI's. We decided to do two more IUI's after the lap, both unsuccessful. The lap can sometimes help with IUI success but my re told me as well that IVF bypasses endo. We are now in the middle of our first IVF. Good luck.

This seems exactly in line with what my RE is telling me. Thank you for the reassurance and good luck with your first IVF!

MsAmandaPants · November 2013

beachy6 said:

Welcome! I would imagine that the idea of endo, at this point is a suggestion/possibility because endo cannot be diagnosed any other way than by sight through a lap surgery and then the lesions sent off to be biopsied. So, one reason for you to consider the lap would be to see if you really do have endo or not.
But, you are right about there being a differing opinion on whether to lap or not before IVF. My current RE feels that it isn't necessary because IVF bypasses the issues and a lap can't fix implantation problems. However, if you are doing more iui's then a lap to remove the endo would be beneficial. The endo creates a toxic environment and it doesn't allow the sperm and egg to "talk" and find each other. So, with iui, it would be problematic. However, with IVF, no big deal.
Personally, I only have my laps to control pain every couple of years. I've never had it help with fertility issues, so I happen to agree with my RE about it not really mattering.
If you have any endo questions, please feel free to ask! It's a terrible disease and can be difficult to handle since we all look so normal on the outside, but feel so sick all the time. Life in pain can be pretty depressing and it's nice to know you're not alone!
I wish you the best of luck!
Edited to add: There is also a lot of research to support that stage 1/2 don't impact fertility, where 3/4 have a negative impact on fertility. So, it would be good for you to have yours staged just so you know what exactly you're dealing with. I feel that with infertility issues, being educated ourselves is the most important thing so we can fight for what we want/need and be educated when talking to our docs. Sometimes, it feels like we've been in the trenches for so long that we know more then they do

This is really helpful. Thank you!

Amen to your last paragraph! I am a big believer in being educated and being an advocate for yourself. My first RE initially missed my complete molar pregnancy and it was only confirmed because I was dogged about running an additional test. Unfortunately, lots of researching tends to make for a more complicated picture and often leads me to second guess my RE. I might have a teensy issue with trust and control.

I'm frustrated because endo has never come up before now (and I've been working with an RE for over a year). I brought it up to him at my last "where do we go now" appointment because I have some symptoms (some pain with intercourse, bathroom when I have my period, ongoing ovary sensations outside of ovulation, tailbone pain). None of my symptoms are debilitating; I rarely even use ibuprofen when I have my period. I expected him to just dismiss it, but instead he came back with "oh, I would not be surprised at all, I don't doubt you have endometriosis" and said that the symptoms have no correlation to the stage of disease. I'm not sure if he suspects it because he truly suspect endo or just because it seems like a likely guess (does that make sense?)

He reiterated it again yesterday and said he would want to do a lap unless we do IVF.

I've read about endo creating a toxic environment, but you were the first to explain specifically that it prevents communication between sperm and egg! Thank you for filling in that blank. I've also seem some research that the same "toxic environment" can prevent implantation and even harm an embryo.

I'm only going to be able to afford IVF once, so I want to make sure that I have the best playing field. I'm wondering if I should do the lap just to get staged and know exactly what they are dealing with and the extent of the "toxic environment," but my RE doesn't seem so concerned.
And, unfortunately, if it is all over my ovaries, they aren't going to be able to do anything about it because of the DOR and the risk that removing it could take what remaining healthy tissue I have left.

I wish there were some easy answers and decisions with IF!

sweetgoose · November 2013

The previous posters gave you some great endo info & I second all of it! I have stage IV endo & my last lap was a year ago. I am getting ready to start my first IVF cycle & my RE had me do 3 months of continuous birth control to help with the pain symptoms & to help the inflammation in my abdomen calm down before starting this cycle. She said that there is research & studies that show 3 months of continuous birth control before an IVF cycle helps women who have endo.
Good luck & if you have any questions about endo, feel free to ask!

Twinkie0612 · November 2013

According to the seminar I went to at my clinic, they usually only do a lap to treat endo symptoms ( relieve pain), they don't think that treating the endo will increase your odds of success. My clinic would want to test you for other auto immune issues such as Elevated NK cells. It is more common in women with endo and other auto immune diseases.

RunCC37 · November 2013

Hi & welcome over here! I'm so sorry for all you've been through and hope your sticky baby is coming up soon!!

I had a similar decision to make in July (minus the losses, AMA, and DOR). After three failed IUIs with 'beautiful responses' to the meds and no BFP, my doctor gave me the choice between the lap or IVF. That was a very hard decision for us to make... feel free to check out my blog if you're interested in the thought process: Clarity... the short version is that we decided to do the lap and found a teeny, tiny spot of endo. After that, we did one cycle with injects (which was supposed to be with IUI but got canceled due to overstimulation). When that failed we said forget it, time for IVF. All the while, I felt like we were 'cutting the line' and jumping to IVF too soon. But standing from my perspective now, with IVF#1 being an utter failure with no frosties, I know we made the right decision. If we knew back in July what we knew now, I would've skipped the lap and gone straight to IVF. Hind sight is always 20/20... there's no way we could have known that endo wasn't our problem without the lap.

Good luck making your decision... everyone's situation is so unique, so only you can make the "right" decision for you. Don't forget that there's no right or wrong decision in all of this. Feel confident in whatever direction you choose and good luck!!

chrissy1013 · November 2013

Hi all,

I'm normally a lurker here but felt like I should weigh in on the endo discussion. I do not have DOR and can't comment on that. Sorry for the length.

I was diagnosed with stage 4 endo at 22 during a lap for what looked like an ovarian cyst. I am now 34 and have been through a number of fertility treatments over the last 4 years. My first RE's opinion was similar to your RE in that she said IVF would get past all of the endo and she did not recommend surgery. Of course, I was happy to hear that. Nobody wants to go through unnecessary surgery. After 3 failed IVF cycles, we decided to switch to a new RE in our area who is known as an endo expert.

He suggested a lap as my endo was on my ovaries according to the ultrasounds. Endo on the ovaries can impact your response to stims in terms of the number of eggs and the quality of those eggs. So it is not completely true that IVF gets around the endo issue. He would not put me through an IVF cycle without a lap. It's important to keep in mind that given his expertise with endo, he is also well known for minimally invasive surgery and pretty progressive lap techniques. My endo was pretty bad and had spread to my bowel as well. We decided to take his advice and have the surgery. Due to insurance issues we ended up waiting 9 months after that lap to start IVF and wouldn't you know it, my endo was back along with a polyp. So, he wanted to do another lap. Given his expertise and our desperation to have a baby, we agreed. After going in, he said the endo had reappeared on both ovaries and would have impacted my stimulation response.

Well, a few months later, we started the IVF stims with a similar but slightly different protocol versus my prior cycles. I stimmed very fast and we cancelled the cycle. My ovaries were in much better shape and my response was much faster than before. We adjusted meds and a few months later tried again. Both the number of eggs retrieved and quality far exceeded my prior three cycles, even with a lower dose of stims. We transferred two blasts on day 5 and are now pregnant with twins. We also froze three blasts. Previously, we had day 3 transfers and never had embryos to freeze. While we had a slightly different protocol (ganirelix instead of lupron, added lovenox), different RE and lab, I am convinced the laps helped my situation, especially since my response to stims improved dramatically.

My recommendation would be to go to a RE known for endo and get their opinion on a lap. I am in the Chicago area and happy to pass along my RE's name if that would be helpful. After three failed IVF's an no other known issues, I was convinced that my problem was the endo and believe we did the right thing by switching to an RE who specialized in endo.

MsAmandaPants · November 2013

Twinkie0612 said:

According to the seminar I went to at my clinic, they usually only do a lap to treat endo symptoms ( relieve pain), they don't think that treating the endo will increase your odds of success. My clinic would want to test you for other auto immune issues such as Elevated NK cells. It is more common in women with endo and other auto immune diseases.

Thanks for responding! I am interested in looking into immunological testing and will definitely ask about the NK cells.

MsAmandaPants · November 2013

sweetgoose said:

The previous posters gave you some great endo info & I second all of it! I have stage IV endo & my last lap was a year ago. I am getting ready to start my first IVF cycle & my RE had me do 3 months of continuous birth control to help with the pain symptoms & to help the inflammation in my abdomen calm down before starting this cycle. She said that there is research & studies that show 3 months of continuous birth control before an IVF cycle helps women who have endo. Good luck & if you have any questions about endo, feel free to ask!

Thanks for responding. He mentioned that he would not want me to be on birth control for an extended period because of my DOR. I think my clock might be clicking down too fast, but I will ask again.

MsAmandaPants · November 2013

RunCC37 said:

Hi & welcome over here! I'm so sorry for all you've been through and hope your sticky baby is coming up soon!!

I had a similar decision to make in July (minus the losses, AMA, and DOR). After three failed IUIs with 'beautiful responses' to the meds and no BFP, my doctor gave me the choice between the lap or IVF. That was a very hard decision for us to make... feel free to check out my blog if you're interested in the thought process: Clarity... the short version is that we decided to do the lap and found a teeny, tiny spot of endo. After that, we did one cycle with injects (which was supposed to be with IUI but got canceled due to overstimulation). When that failed we said forget it, time for IVF. All the while, I felt like we were 'cutting the line' and jumping to IVF too soon. But standing from my perspective now, with IVF#1 being an utter failure with no frosties, I know we made the right decision. If we knew back in July what we knew now, I would've skipped the lap and gone straight to IVF. Hind sight is always 20/20... there's no way we could have known that endo wasn't our problem without the lap.

Good luck making your decision... everyone's situation is so unique, so only you can make the "right" decision for you. Don't forget that there's no right or wrong decision in all of this. Feel confident in whatever direction you choose and good luck!!

Thank you so much for sharing your experience. So much of IF seems to be educated guesswork. We all do the best we can do, but getting to the decision point can be so stressful.

MsAmandaPants · November 2013

chrissy1013 said:

Hi all,

I'm normally a lurker here but felt like I should weigh in on the endo discussion. I do not have DOR and can't comment on that. Sorry for the length.

I was diagnosed with stage 4 endo at 22 during a lap for what looked like an ovarian cyst. I am now 34 and have been through a number of fertility treatments over the last 4 years. My first RE's opinion was similar to your RE in that she said IVF would get past all of the endo and she did not recommend surgery. Of course, I was happy to hear that. Nobody wants to go through unnecessary surgery. After 3 failed IVF cycles, we decided to switch to a new RE in our area who is known as an endo expert.

He suggested a lap as my endo was on my ovaries according to the ultrasounds. Endo on the ovaries can impact your response to stims in terms of the number of eggs and the quality of those eggs. So it is not completely true that IVF gets around the endo issue. He would not put me through an IVF cycle without a lap. It's important to keep in mind that given his expertise with endo, he is also well known for minimally invasive surgery and pretty progressive lap techniques. My endo was pretty bad and had spread to my bowel as well. We decided to take his advice and have the surgery. Due to insurance issues we ended up waiting 9 months after that lap to start IVF and wouldn't you know it, my endo was back along with a polyp. So, he wanted to do another lap. Given his expertise and our desperation to have a baby, we agreed. After going in, he said the endo had reappeared on both ovaries and would have impacted my stimulation response.

Well, a few months later, we started the IVF stims with a similar but slightly different protocol versus my prior cycles. I stimmed very fast and we cancelled the cycle. My ovaries were in much better shape and my response was much faster than before. We adjusted meds and a few months later tried again. Both the number of eggs retrieved and quality far exceeded my prior three cycles, even with a lower dose of stims. We transferred two blasts on day 5 and are now pregnant with twins. We also froze three blasts. Previously, we had day 3 transfers and never had embryos to freeze. While we had a slightly different protocol (ganirelix instead of lupron, added lovenox), different RE and lab, I am convinced the laps helped my situation, especially since my response to stims improved dramatically.

My recommendation would be to go to a RE known for endo and get their opinion on a lap. I am in the Chicago area and happy to pass along my RE's name if that would be helpful. After three failed IVF's an no other known issues, I was convinced that my problem was the endo and believe we did the right thing by switching to an RE who specialized in endo.

Thanks so much for sharing your story and congratulations on your pregnancy! From what I understand, if I do have endo on my ovaries, there is not much they will do given my DOR. The concern is that removal of the endo tissues from ovaries could also take what little healthy ovarian tissue I have left and may push me to early menopause. A little bit of a damned if you do, damned if you don't scenario, unfortunately. I'm in NC, but will definitely try to find a local endo expert.

ETA: one question: how did you find your expert? was it a referral? a web search? thanks!

chrissy1013 · November 2013

MsAmandaPants said:

Thanks so much for sharing your story and congratulations on your pregnancy! From what I understand, if I do have endo on my ovaries, there is not much they will do given my DOR. The concern is that removal of the endo tissues from ovaries could also take what little healthy ovarian tissue I have left and may push me to early menopause. A little bit of a damned if you do, damned if you don't scenario, unfortunately. I'm in NC, but will definitely try to find a local endo expert.

ETA: one question: how did you find your expert? was it a referral? a web search? thanks!

It was actually a bit strange how we came to find our new RE. My acupuncturist highly recommended him along with one other RE, then another woman that I work with recommended the same two REs. Oddly enough, the DH and I realized we had some common friends with the reception staff at our old RE's office and after the third failed IVF cycle, they quietly handed us our file and told us that it was in our best interest to see the endo specialist and never to come back to our original RE. That one was a shock! Finally, we connected with an old family friend who had children as a result of IVF in the 90's and she also told us about our RE, saying her problem was endo and his expertise is what got them pregnant so long ago. Suddenly there were so many people telling us to see him that we couldn't ignore it.

We interviewed our new RE along with another and just felt that given the endo situation, going with someone who is an expert in that field made more sense. As we researched him, we saw that he often gives lectures on endo and is on the board of the International Endometriosis Association. Most importantly, when we set up a consult, he didn't tell us the same thing everyone else did, that IVF gets around endo. After three failed cycles, we no longer really believed that was our situation.

dreamingofdimples · November 2013

I'm a little late joining this discussion. I have endo and DOR so pretty much the same diagnosis. The comment above about getting on birth control for a few months...I would really talk to your doctor about if you're DOR because it might supress you way too much. My response to stims would have been even worse if I was on BCPs before my IVF cycle. It does help with the endo pain but if your goal is to get pregnant via IVF or medicated IUI...you might want to reconsider.

With the lap, both of my REs said it was up to me if I wanted to do the lap before IVF. There isn't any conclusive studies either way on whether it is beneficial or harmful. But I believe the more information you have about your body - the better your doctor can tailor your protocol specifically for you.

For example, my friend didn't get a lap even though she suspected she had endo. She did two rounds of IVF which both failed. She switched to CCRM and they did a lap. Her body was riddled with stage 5 endo that they couldn't even remove because it was all wrapped around her organs. She did IVF again but this time they put her on 3 months of Lupron Depot shots to shut her system down before her FET and now she is pregnant with twins. Good luck figuring out the right path for you...hope this was helpful.

beachy6 · November 2013

MsAmandaPants said:

beachy6 said:

Welcome! I would imagine that the idea of endo, at this point is a suggestion/possibility because endo cannot be diagnosed any other way than by sight through a lap surgery and then the lesions sent off to be biopsied. So, one reason for you to consider the lap would be to see if you really do have endo or not.
But, you are right about there being a differing opinion on whether to lap or not before IVF. My current RE feels that it isn't necessary because IVF bypasses the issues and a lap can't fix implantation problems. However, if you are doing more iui's then a lap to remove the endo would be beneficial. The endo creates a toxic environment and it doesn't allow the sperm and egg to "talk" and find each other. So, with iui, it would be problematic. However, with IVF, no big deal.
Personally, I only have my laps to control pain every couple of years. I've never had it help with fertility issues, so I happen to agree with my RE about it not really mattering.
If you have any endo questions, please feel free to ask! It's a terrible disease and can be difficult to handle since we all look so normal on the outside, but feel so sick all the time. Life in pain can be pretty depressing and it's nice to know you're not alone!
I wish you the best of luck!
Edited to add: There is also a lot of research to support that stage 1/2 don't impact fertility, where 3/4 have a negative impact on fertility. So, it would be good for you to have yours staged just so you know what exactly you're dealing with. I feel that with infertility issues, being educated ourselves is the most important thing so we can fight for what we want/need and be educated when talking to our docs. Sometimes, it feels like we've been in the trenches for so long that we know more then they do

This is really helpful. Thank you!

Amen to your last paragraph! I am a big believer in being educated and being an advocate for yourself. My first RE initially missed my complete molar pregnancy and it was only confirmed because I was dogged about running an additional test. Unfortunately, lots of researching tends to make for a more complicated picture and often leads me to second guess my RE. I might have a teensy issue with trust and control.

I'm frustrated because endo has never come up before now (and I've been working with an RE for over a year). I brought it up to him at my last "where do we go now" appointment because I have some symptoms (some pain with intercourse, bathroom when I have my period, ongoing ovary sensations outside of ovulation, tailbone pain). None of my symptoms are debilitating; I rarely even use ibuprofen when I have my period. I expected him to just dismiss it, but instead he came back with "oh, I would not be surprised at all, I don't doubt you have endometriosis" and said that the symptoms have no correlation to the stage of disease. I'm not sure if he suspects it because he truly suspect endo or just because it seems like a likely guess (does that make sense?)

He reiterated it again yesterday and said he would want to do a lap unless we do IVF.

I've read about endo creating a toxic environment, but you were the first to explain specifically that it prevents communication between sperm and egg! Thank you for filling in that blank. I've also seem some research that the same "toxic environment" can prevent implantation and even harm an embryo.

I'm only going to be able to afford IVF once, so I want to make sure that I have the best playing field. I'm wondering if I should do the lap just to get staged and know exactly what they are dealing with and the extent of the "toxic environment," but my RE doesn't seem so concerned.
And, unfortunately, if it is all over my ovaries, they aren't going to be able to do anything about it because of the DOR and the risk that removing it could take what remaining healthy tissue I have left.

I wish there were some easy answers and decisions with IF!

You are absolutely right that the level of pain has no correlation to the staging of the disease. But, the symptoms you have definitely suggest some level of endo. The pain might not be debilitating at this point, but it's not normal. Most women don't have pain during sex, using the restroom during a period, ovulating. It's very common in women with endo. Actually, a lot of women with advanced stage endo have less pain because the organs have been twisted/riddled with the disease for so long that your body just gets used to it. Sad, but true.

I also did quite a few months of continuous bcp after my last lap to help with endo pain right before my ivf. It didn't help with my cycle though. There is some research that shows women with endo have issues with implantation. This can be "fixed" by using Lupron for two months before ivf (but after ER, so you'd have to do a freeze all). Personally, I'm completely against ever using Lupron for endo issues, but Femara, when used a few days before transfer is supposed to do the same thing. There is a protein in the uterine lining that is missing in many women with endo. It's called beta-3 integrin. If you only have one chance at ivf, this is worth looking into I think!

MsAmandaPants · November 2013

chrissy1013 said:

MsAmandaPants said:

Thanks so much for sharing your story and congratulations on your pregnancy! From what I understand, if I do have endo on my ovaries, there is not much they will do given my DOR. The concern is that removal of the endo tissues from ovaries could also take what little healthy ovarian tissue I have left and may push me to early menopause. A little bit of a damned if you do, damned if you don't scenario, unfortunately. I'm in NC, but will definitely try to find a local endo expert.

ETA: one question: how did you find your expert? was it a referral? a web search? thanks!

It was actually a bit strange how we came to find our new RE. My acupuncturist highly recommended him along with one other RE, then another woman that I work with recommended the same two REs. Oddly enough, the DH and I realized we had some common friends with the reception staff at our old RE's office and after the third failed IVF cycle, they quietly handed us our file and told us that it was in our best interest to see the endo specialist and never to come back to our original RE. That one was a shock! Finally, we connected with an old family friend who had children as a result of IVF in the 90's and she also told us about our RE, saying her problem was endo and his expertise is what got them pregnant so long ago. Suddenly there were so many people telling us to see him that we couldn't ignore it.

We interviewed our new RE along with another and just felt that given the endo situation, going with someone who is an expert in that field made more sense. As we researched him, we saw that he often gives lectures on endo and is on the board of the International Endometriosis Association. Most importantly, when we set up a consult, he didn't tell us the same thing everyone else did, that IVF gets around endo. After three failed cycles, we no longer really believed that was our situation.

It sounds like the planets aligned to push you to the perfect RE! I'm going to do some research. Sadly, my insurance only covers the one clinic that I am at now, so even if we found the perfect doc, I'm not sure that we could pursue treatment totally OOP. You've definitely given me a lot to think about. Thanks!

MsAmandaPants · November 2013

dreamingofdimples said:

I'm a little late joining this discussion. I have endo and DOR so pretty much the same diagnosis. The comment above about getting on birth control for a few months...I would really talk to your doctor about if you're DOR because it might supress you way too much. My response to stims would have been even worse if I was on BCPs before my IVF cycle. It does help with the endo pain but if your goal is to get pregnant via IVF or medicated IUI...you might want to reconsider.

With the lap, both of my REs said it was up to me if I wanted to do the lap before IVF. There isn't any conclusive studies either way on whether it is beneficial or harmful. But I believe the more information you have about your body - the better your doctor can tailor your protocol specifically for you.

For example, my friend didn't get a lap even though she suspected she had endo. She did two rounds of IVF which both failed. She switched to CCRM and they did a lap. Her body was riddled with stage 5 endo that they couldn't even remove because it was all wrapped around her organs. She did IVF again but this time they put her on 3 months of Lupron Depot shots to shut her system down before her FET and now she is pregnant with twins. Good luck figuring out the right path for you...hope this was helpful.

It was helpful! I don't think that my RE would allow me to do the three months of BCP precisely for the reasons that you mentioned--that it would over-suppress me and also we don't have the time!

If you don't mind my asking . . . you decided to go ahead with the lap given your DOR diagnosis. Did you have extensive endo on your ovaries? Have you seen any change in your DOR status (for good or bad) since the lap? I, like you, believe in information and am leaning towards doing the lap just to see what we are truly dealing with. That said, I've read a lot of research indicating that performing lap on DOR ovaries can make things worse, inadvertently removing healthy ovarian tissue. Did your RE mention anything about that to you?

MsAmandaPants · November 2013

beachy6 said:

You are absolutely right that the level of pain has no correlation to the staging of the disease. But, the symptoms you have definitely suggest some level of endo. The pain might not be debilitating at this point, but it's not normal. Most women don't have pain during sex, using the restroom during a period, ovulating. It's very common in women with endo. Actually, a lot of women with advanced stage endo have less pain because the organs have been twisted/riddled with the disease for so long that your body just gets used to it. Sad, but true.
I also did quite a few months of continuous bcp after my last lap to help with endo pain right before my ivf. It didn't help with my cycle though. There is some research that shows women with endo have issues with implantation. This can be "fixed" by using Lupron for two months before ivf (but after ER, so you'd have to do a freeze all). Personally, I'm completely against ever using Lupron for endo issues, but Femara, when used a few days before transfer is supposed to do the same thing. There is a protein in the uterine lining that is missing in many women with endo. It's called beta-3 integrin. If you only have one chance at ivf, this is worth looking into I think!

Thank you so much! I am terrified of Lupron, but I have already used Femara without any problems, so I will definitely keep this in mind and look into it. I also just learned from my mom that she also was diagnosed with endometriosis. She had a total hysterectomy during her early 40s because of an enormous fibroid, but they apparently saw endometriosis outside of her uterus as well, but did not stage it. Thanks again for all of your comments and guidance. It has been very helpful.

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