Endometriosis?

tryingyetagain · July 2013

I've had a small cyst on my left ovary for a few months, and the RE suspects it's an endometrial cyst. Although my RE's partner suggested I may have further endometriosis inside keeping the egg from making it to the tube, both REs don't think it's worth checking out via lap because of my age, 42. Which infuriates DH and I! One RE asked me to request the surgical notes from the hospital where I had my right tube removed last year, to see if they mentioned any signs of endo. It was clear he assumed there would be no mention of endo, and he just wanted the notes to prove it to me. I just got the notes in the mail today. I will be mailing them to the RE tomorrow. Two of the sentences in the notes are as follows:

"Right tube and ovary are adherent to the right lower pelvis. Small amount of adhesions between the bowel and right anterior abdominal wall."

For those of you who know anything about endo, does this sound like endo to you? From what little I know, it does to me. If this is endo, I am so frustrated that no one ever told me this after the surgery! We've wasted more than a year, and a lot of money. And I am dealing with two REs that probably still won't do anything about it. Ugh. And I don't really want to go through lap again, even if he did suggest it. Dougle ugh.

Any thoughts or info you can offer would be much appreciated!

huskermama · July 2013

I keep checking in to see how you are doing and hoping for some better news...and yes, I would certainly say that sounds like endo to me. I of course don't have access to my charts, but after my pre-op follow-up with my OB/fert specialist who did the surgery he consistantly referred to the many "adhesions" they removed and he showed me pics of what my poor insides looked like before and after. As far as I understand adhesions is just a fancy way of saying scar tissue, which is basically what endo is.

Now that I think of it....I can't believe your RE didn't request those charts a long time ago! Doesn't seem to make any sense. How can you make an accurate diagnosis if you don't have the whole picture?!? Now I'm angry for you!

Best of luck and hoping you get the news you are looking for and your RE's get an attitude adjustment!

tryingyetagain · July 2013

Thank you, huskermama, for your kind words and input! Much appreciated! Sorry in advance this is so long!

I'm angry too, and it gets worse. I emailed the RE who told me to get the hospital surgical records. I told him what the notes said and asked if it sounded like endo, and if so, where do we go from here? His response.... "I am out of the office this week. Back next Monday. Feel free to send note to Dr. ---- if you wish." So he's totally blowing me off, even though he is the one who requested it! And we were billed $52 by the hospital for these d*mn records he asked for!

So I emailed the other RE (technically my RE) with the same question, and I just got his reply: "This really doesn't give enough information to know whether it could be endometriosis, because adhesions can be caused by a multitude of conditions. I don't think that you and I are on the same page when it comes to the diagnosis and treatment of endometriosis and its role in your infertility care. It does look like you and Dr. ----- may be better suited when it comes to this discussion, so perhaps it would be appropriate to get the advice about next steps from him"

I was stunned when I read both emails. What a couple of jerks. They are passing me around like a hot potato. I don't understand why they don't want to just treat me. It's like I stepped on my RE's toes, and now he is all offended and pissy about it, and so he's going to make me suffer. And the other RE doesn't want to get in the middle, because he has to work with the guy!

They have never asked if I have pain during intercourse, never cared that I spot before each period, never asked if I have persistent unexplained pelvic pain (I have all three), never even given me a pelvic exam. They have noted a have a persistent cyst that is probably endometriosis, and now it turns out last year's surgery notes indicate adhesions (which are when organs get glued together to the surrounding areas, from what I understand), and yet they keep blowing me off. I am so angry, and defeated, and yet we can't afford to go out of pocket. These jokers are part of our HMO. I don't know what to do. I am really beside myself.

tryingyetagain · July 2013

And, huskermama, I forgot to add, I am so glad your pregnancy is going well! I hope you will keep us posted now and then!

huskermama · July 2013

tryingyetagain:

Thank you, huskermama, for your kind words and input! Much appreciated! Sorry in advance this is so long!

I'm angry too, and it gets worse. I emailed the RE who told me to get the hospital surgical records. I told him what the notes said and asked if it sounded like endo, and if so, where do we go from here? His response.... "I am out of the office this week. Back next Monday. Feel free to send note to Dr. ---- if you wish." So he's totally blowing me off, even though he is the one who requested it! And we were billed $52 by the hospital for these d*mn records he asked for!

So I emailed the other RE (technically my RE) with the same question, and I just got his reply: "This really doesn't give enough information to know whether it could be endometriosis, because adhesions can be caused by a multitude of conditions. I don't think that you and I are on the same page when it comes to the diagnosis and treatment of endometriosis and its role in your infertility care. It does look like you and Dr. ----- may be better suited when it comes to this discussion, so perhaps it would be appropriate to get the advice about next steps from him"

I was stunned when I read both emails. What a couple of jerks. They are passing me around like a hot potato. I don't understand why they don't want to just treat me. It's like I stepped on my RE's toes, and now he is all offended and pissy about it, and so he's going to make me suffer. And the other RE doesn't want to get in the middle, because he has to work with the guy!

They have never asked if I have pain during intercourse, never cared that I spot before each period, never asked if I have persistent unexplained pelvic pain (I have all three), never even given me a pelvic exam. They have noted a have a persistent cyst that is probably endometriosis, and now it turns out last year's surgery notes indicate adhesions (which are when organs get glued together to the surrounding areas, from what I understand), and yet they keep blowing me off. I am so angry, and defeated, and yet we can't afford to go out of pocket. These jokers are part of our HMO. I don't know what to do. I am really beside myself.

WOW! I can't believe that.....just incredible and oh so wrong! Yes, I'm sure adhesions can be caused by other things, and yes, endo is hard to diagnose, but it seems like they aren't even willing to rule it out. For the longest time I felt like I was crazy and that people thought I was a hypochondriac, but pain is pain and minus the spotting, I experienced everything you did. It took me a year to convice my doctor there was something going on besides wacked out hormone levels so I understand the frustration and the feeling of being stuck.

Question....did the hospital happen to take any images of your abdominal cavity during the surgery? If so, I just wonder if that with your chart might better help one of the RE's give you some answers. I wonder if there is anything else in the chart somewhere that will provide more insight?

Why does Dr. # 2 think you are not on the same page? Does he think if it is endo that it doesn't matter b/c you have other issues too? How does he know removing it won't help if that is what it is?

I so hope that these 2 RE's can set aside whatever differences between them that there seems to be and help you...isn't that what doctors are supposed to do??? I just hope they decide to explore all the options before throwing in the towel...maybe if they were in your shoes they would understand and not be so seemingly quick to dismiss you.

And thank you...things seem to be going along well so far and hit 12 weeks this past weekend! Feeling okay all things considered and just extremely greatful to have made it this far. Even if we wouldn't have been successful, the lap was totally worth it. To be pain free and live a normal life was something I took for granted before...never again!

Still praying and keeping my fingers crossed for you and hoping I see you (and the other (2IF ladies) over on PAIF soon!

~Jen

tryingyetagain · July 2013

Yes, I feel like they think I am a hypochondriac. I have just been suffering through gradually worse pelvic pain, and if I bring it up now, they will think I'm just saying it to convince them to do lap. It would be nice to just get pregnant and never have to talk to them again. But alas....

I don't think the hospital took photos, because I requested copies of my entire file, and there weren't any photos. Honestly, I think if there were photos labelled with the phrase "Stage IV Endometriosis," they would tell me it's not relevant.

I honestly don't understand what "page" the RE is on. He obviously has to know endo is a leading cause of infertility, and is treatable. So how is it not relevant to my case? He can't possibly know removing it won't help. It's like he won't admit that he should have looked into this a long time ago, and no matter how many signs, he doesn't want to admit he made a mistake.

And the pain issue is getting worse. I've just been dealing with it, but it's starting to become almost daily, and a couple of days ago it was as bad as it was when I was going through the ectopic. I think I will just ask my OB/GYN if I can get Letrozole through him, and talk to him about possible treatment for endo. We wanted to try 1-2 more IUIs, but the last three months have been cancelled anyways. Just feel like cutting my losses at this point.

On a happier note, I'm so glad all is going well, and that you are already at the end of your first trimester! That must be such a huge relief! I hope the next six months are wonderfully boring for you! Thanks again for validating me. Smile

tryingyetagain · July 2013

Jen, not sure if you are still checking this thread (or anyone else), but I'll update just in case. I emailed my RE and very nicely said it would be helpful to know why he doesn't think endo would be relevant. His response:

"Treatment of endometriosis does not have a significant impact on fertility rate. At most, it might increase it by 20% over the 18 months after surgery in women less than 40. I don't think you have endometriosis and even if you do, at age 42 it is very unlikely that surgery would be a good choice to improve your fertility. If you want to do something to improve your chances for pregnancy, you should consider IVF. Unfortunately, there may not be any good options other than that. I think that is a fair assessment of the clinical evidence and the best advice I can give you."

Wow. He's never asked me a single question about endo symptoms and never even examined me. So how can he say he doesn't think I have endometriosis? And any increase in fertility rate sounds good to me. I hate it that he has written me off just due to my age. My AMH was a nice 1.73 (great for my age), so there should still be hope for me.

huskermama · July 2013

Hmmmm...that is disappointing. While I think we all know that we're "old, used-up, and high-risk" after the age of 35, it doesn't mean that having more children is impossible....people do it all the time. From what I've read (and I'm sure you have too) I think they say IUI success rates are usually better in women under 40, but then again you have a good AMH so to me age shouldn't really matter in yoru case.

I guess in a tiny way I can respect that he is trying to give you what he feels is his honest opinion and I can maybe understand that he doesn't want to promise you something if he doesn't think he can deliver. And, of course every woman and diagnosis is different. HOWEVER, that said, I still feel that it is his job to respect your wishes and do everything possible to try to help you. It's not like he isn't getting paid ridiculous amounts of money!

I would definitely suggest going back to your OB at this point...maybe he/she can help? We spent several cycles on clomid with our OB/fert specialist before finally doing the lap and discovering the endo. In fact, my OB did both surgeries (the exploratory one that lead to the dx and the one a few months later to remove all the adhesions) and we tried for a few month on our own after before finally going the RE route. My OB did tell me that 18 months after the surgery was our best time to try to conceive and w/out the endo interfering, it increased our chances quite a bit. In fact, w/out the surgery and IUI, I'm convinced we would have never been successful on our own. My ovaries were basically glued shut and I had it in several other places too. Our OB knew we wanted more children, but like you, due to the pain, I was at a breaking point. When we did the lap DH and I decided that if for no other reason at least I would be able to function again and not be in constant, debilitating pain. As much as the two laps sucked, it was totally worth it to live "normal" life and be able to be pain free.

So hoping you get some answers. Sounds like you have been through the ringer! IF is hard enough, and if you don't have the support of your medical team I can only image how much more frustrating that makes things. I'll continue to check in over here and look for updates from you! Hugs and prayers!

tryingyetagain · July 2013

Thanks. I actually did appreciate the honesty part of his email too. What bothered me was that he has decided I don't have endometriosis without ever examining me or finding out if I have any symptoms. And despite the cyst that the other RE has already called a probable endometrioma, plus this new information about the adhesions seen during last year's lap. It just doesn't make sense to me.

I have been thinking about it a lot today. I feel like I'm grieving because he has kind of made the decision for me, and I wasn't ready yet. But the fight to figure this all out has just gone out of me. I think we are probably done with fertility treatments after this experience. I don't even think I will contact their office again. Maybe the other RE will call next week when he is back, but I don't expect he will want to further piss off evil RE, so I'm not expecting much.

Thank you again for helping me process all of this the past couple of days.

huskermama · July 2013

Sorry to hear that, but can't say that I entirely blame you. We had decided that that this was the last year for us too, and if our last IUI hadn't worked, we would have been finished b/c we can't afford IVF. I hope that whatever happens you find peace, and hopefully can find a way to manage your pain so you can enjoy your family.

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