Endometriosis and IF options

[Anonymous]

I was diagnosed with endometriosis over three years ago and have gone through a combination of lupron, laps, and am now venturing into IF treatment options. Outside of the lap (which I understand may help immediately), does anyone have past experience with endometriosis? What eventually worked for you? IUI or IVF or something else (i.e., naturally after a lap?). Thanks in advance!

[Anonymous]

I had/have stage 4 Endometriosis. I did a lap and we tried naturally for a few months and also tried a HCG (?) trigger one month -- but those did not work. Our RE then recommend that we skip IUI and go straight to IVF. We sought a 2nd opinion and that RE said the same thing. So we went with IVF and got pregnant that way. We failed the first few times (chemical pregnancies) and ultimately used PGD which worked for us.

[Anonymous]

This is a tough question because endo can impact women in so many different ways. Do you know what stage of endo you have?

After a year of TTC, I was diagnosed with Stage IV (severe endometriosis). My fallopian tubes, ovaries, bladder, and bowel were all severely impacted. I had a laparoscopy followed by a laparotomy. We were told that women often try IUI before IVF, but with the amount of damage (especially on the ovaries...endometriomas can impact your ovarian reserve and the number of recruiting follicles) I had, as well as the aggessiveness of the disease in my body (in the three months between the two surgeries, growths regenerated everywhere), we went to IVF.

In terms of IVF, understand that if you have severe endo, there is a higher probability that you will be a poor responder to fertility drugs. I had a cancelled cycle due to poor response, and was then switched to a poor responder protocol. So, my first full cycle I produced few eggs, one of which is now my baby!

I went to Dr. Rifka at Columbia, who was excellent, but I have also heard good things about Dominion and Shady Grove (though I am not sure if they will do surgeries, should you need another cleanout).

Good luck!

[Anonymous]

To the PP, I was initially diagnosed with Stage 2/3 by my old Dr. in 2005, but now after consulting an RE, who looked at the 2005 surgical report, he says I likey have Stage 4 (due to the presence of an endometrioma). So, I have the RE in place (Dominion) and a new Dr. (a new gyn) is doing the second "clean-out." At this point, I don't know how far it has spread since 2005, but I'm in pretty severe pain. I am just trying to get an idea of what eventually worked for most people, though I do know treatment varies widely. I had suspected most people skip IUI and go straight to IVF, but just wanted to confirm. Thanks too for the info re: response and endo b/c I didn't know that. Thanks for the replies thus far.

[Anonymous]

Sorry if I messed the post up.

At any rate, to the PP, I was originally diagnosed by my former doctor with stage 2/3. After further consultation with an RE (he looked at the surgical report), he has diagnosed me with stage 4 due to the presence of an endometrioma in 2005. I am now with a new gyn who will perform a second lap next week.

I suspected most people jump right to IUI, but just wanted to confirm (though I do know it varies widely depending on diagnosis, etc.). Thanks too to the PP for info re: responding to drugs with endo.

Thanks in advance for any further replies!

[Anonymous]

I had a Lap this past August and was diagnosed with stage 2 endo...after a little over a year of trying. (I'm 37) The endo was around my left ovary (which hadn't shown up w/ a sono) and lots around my bladder. Post Lap, my doc said everything looked great and was clean, but when I met with the RE I eventually switched to in December, she noted that my left ovary looked creanated and my right ovary likely had an endometrioma.

The new RE, along with the others I had consulted with, but ironically not my then current doctor, suggested we move to IVF. At that point we had done 4 IUIs. We stayed with our RE for 2 more cycles and had 2 more failed IUIs, after which we were at the end of our rope, so we went for the IVF. The new RE did state that she didn't think that the endo wasn't the reason I wasn't getting pregnant and that she didn't expect the potential endomitrioma to be an issue with IVF since I was ovulating from that ovary.

I did respond well to the stimulation (despite being a low IUI responder)......15 eggs total, 14 mature and 11 good quality and properly fertilized. I am happy to say that I'm almost 12 weeks pregnant and can't say for sure if it definitely would have taken IVF, but it did work! I will say that I am the type of patient who wanted to investigate every option NOT to have IVF, which I feel like I did.

Good luck! I think you're in good hands at Dominion, although to me, they did push the IVF a little hard, so be sure to speak up and take the time you need with the decision.

[Anonymous]

How are you? I don't have endo but the REs that I interviewed both had the philosophy that once you reach as certain age it wasn't worth wasting time doing treatment like lupron and laps, and that you should procede to IUI or IVF (depending on what is best for your situation and whether you can do those procedures with your endo).

[Anonymous]

Hi, I'm the 13:40 poster and from my experience, that is true that many docs don't do Laps regularly anymore, but after pushing the issue, the response was almost always that they do less of these because of the advancements in IVF. Often, or at least I was told, that if you have endo, IVF will do the trick w/o a Lap. Personally, I didn't want IVF until I had tried everything, so I pushed for the Lap.

[Anonymous]

I'm poster 11:12, and I have heard all the controversies about laps. I will say that if you have an aggressive form of the disease (which I did), the fertility drugs will make any endo present spread like wild fire. I had so much trouble with my bladder and bowels (and everything was fused together against my back pelvic wall -VERY painful), that without the repair work that was done, IVF would have been a disaster. I will say that the "clean out" eased my pain and all my other symptoms, and bought us the time that we needed if the RE was going to dose me up on maximum doses of fertility drugs (which it took for in order for me to produce more than two eggs. There does come a point where the endometriomas grow so fast that they will greatly interfere in the recruitment of follicles in some women.

That being said, I think there are cases where women don't have the crazy painful endo issues, and where doing the lap is nothing more than wasting time when IVF could be started immediately. This disease manifests itself and behaves so differently in different women. If you are going to a good experienced RE (and I truly believe that the docs at SG, Columbia, and Dominion are top notch -we are so lucky in DC to have these choices), I think they will best be able to determine how to proceed given your specifics.

One final note: if you are dealing with infertility and endo, try to roll with the punches. The disease is complicated, and from what I've heard from many sufferers (and experienced to some extent myself), is that some times trial and error is necessary to get this to work. There is also the emotional component to all of this -depending on the damage the endo has done, you may be sitting on the fence between IUI and IVF. For me, I needed some time to come to grips with the fact that IVF was likely the only way I would conceive a child. It's okay for most patients not to jump on the IVF bandwagon right away. It can be a draining process, and you want to be emotionally dialed on and at peace with it before you launch into it.

It's truly wonderful to hear of the successes after the long struggles that many of you have had. To those still struggling -stay strong. You aren't alone in this.

[Anonymous]

Thanks everyone for your comments; it has been difficult thus far to hear about experiences. I appreciate all of your help!

[Anonymous]

"For me, I needed some time to come to grips with the fact that IVF was likely the only way I would conceive a child."

This is a really great point to make. It does take time for many people to adjust to the idea, so I think its good to think of it in baby steps - first consult w/ some REs, read some books or chats, consider your options, etc. I've gone from "no way in hell will I do that to myself" to "here I am, doing IVF."