Theory on diagnosis?

[si1]

So, I feel like I’m going crazy. I feel like my providers are way too casual and it’s been all year long and I feel more confused than when I started.

Was given diagnosis of stage 3 endo— only finding were small endo cysts 1/ ovary. Don’t cause me pain or anything.. didn’t even know they were there.

Had US and MRI.. did baseline bloodwork, HSG (everything clear and in good shape) and finally an IUI that failed and left me with an additional cyst.

I want to know what you think of my numbers/diagnosis. I know this is the internet, but sharing is caring when it comes to knowledge and experience.

My baseline bloodwork is as follows, I’ll give you the highlights of what she commented on:

Estradiol: 79 pg/ml
FSH: 5.57 mlU/ml
LH: 5.40 mlU/ml

Antral follicles between both ovaries was 18.

The doc mentioned that my relationship between estradiol and fsh showed that E was higher a bit than it should be which could indicate a false reading on FSH but she was still pleased and said really not to worry…? But? That must mean something, right?

 

[jazzgirl50]

@si1 I commented on your repost in r/infertilitysucks, but what kind of answers are you looking for with a theory for diagnosis? You have diagnosed endometriosis. That is a diagnosis. I also have endo, and my endo also doesn’t cause me pain (well, didn’t used to), but it’s the cause of my infertility.

Your blood levels look okay to me, they look for estradiol to be under 80 ng/ml at baseline. Estradiol can fluctuate cycle to cycle. Mine does a fair amount, and it’s been higher when I have a cyst post-IUI cycle. I really wouldn’t read too much into your labs. Those and your AFC are fine.

 

[si1]

@jazzgirl50 I guess really it’s just anxiety because I feel like I still don’t understand. I feel like they put me through all of this testing with the promise of trying to find actual evidence of this diagnosis, other than the cyst in my ovaries, but they found nothing and then they tell me all my blood work is normal so it’s really confusing, I know it can be hidden but I feel like I’m playing science experiment with my body and all these hormones just to have it kind of blowback in my face and not work. I know it sounds like I’m having a tantrum but I’ve been trying for literally six years I’m just exhausted, the reason why I made such a big deal about my numbers because she told me that my estradiol is actually a little high which could make my FSH look low, but in fact it could be high, which would indicate a poor reserve, but then my follicle count shows that I don’t really have an issue. My other numbers were within range or normal. She said she’s not concerned about my reserve. You see what I mean it’s just conflicting information and I’m just not sure what to make of that. How do you have endometriomas but no other finding or evidence of endo..? I just have these super toxic cysts that are harming my eggs? if that’s the case I should take them out but she also told me I can’t do that and that’s not an option so apparently my only option is IVF and that is so expensive. Maybe the problem is me and I can’t accept this reality I really don’t know, but I tried IUI and it didn’t go very well, I’m trying to be discouraged because I have to sit this month out

 

[jazzgirl50]

@si1 Yeah I didn’t have any symptoms of endo either, other than an endometrioma they could see on the ultrasound. And infertility.

Truthfully they don’t really know why endo causes infertility. I’ve seen theories about inflammation and egg quality issues, but they really truly don’t know. It’s all just theories. I had my lap in June. Stage III endo diagnosed. Endometrioma excised and diagnosed. My tubes are open. The endo was cleared out as well as it could be. My RE was hopeful we could conceive unassisted easily post-lap. But we’ve had 3 unassisted cycles and 2 failed IUIs since my lap. We’re moving onto IVF in a week. Yeah it is really expensive, and it sucks, but what other choice do I have at this point? It’s not something people WANT to have to do or spend money on. But endo had invaded my ovaries and decimated my eggs, so it’s start now or never.

Your AFC being 18 is really good, I would kill for that. With an AFC like that I really wouldn’t be concerned with ovarian reserve either. FWIW my estradiol was 75 ng/ml at this past baseline and my RE didn’t give 2 craps about it.

 

[si1]

@jazzgirl50 Ugh. Okay. Maybe I just needed some reassurance from another human going through something like what I’m going through and it seems like our situations are pretty similar. Thank you for your perspective I think I’m just really tired and I know I’m trying to wrap myself around something that isn’t understood by medical professionals, so I have no business trying to google into oblivion. Was your endometrioma small or large? Why did you get a lap? Or had it removed? My doc strongly disagreed with me asking for that, and I guess that’s what really irked me because these things are destroying my eggs and ruining implantation every month and shouldn’t I get rid of it right?

 

[si1]

They also said it’s worse for me because I have a small one in each ovary

 

[jazzgirl50]

@si1 Endometriosis is a really tough diagnosis to understand and swallow, at least it has been for me. And I’m a healthcare girly lol! For the doctors to just shrug and say ‘we don’t know!’, even with a diagnosis, has been disheartening to say the least.

I had a lap for a few reasons. My doctor suspected I had endo from the endometrioma, my DOR, our infertility, and recurrent fluid in my lining. My RE has told me repeatedly that they don’t like to blindly treat and wanted to go in hunting for it. They also wanted to do a repeat HSG and an endometrial biopsy on me and I said heck no just put me to sleep and cut me open lol.

The only real treatment for endometriosis is surgery. So we wanted to see if treating the endo would help. They found it on both my ovaries, my uterus, and on my peritoneum. My endometrioma was 4 cm. Not large, but not small. It was recommended to me by my RE to remove it to see if it would aid with increasing my fertility. It didn’t lol. But I would have always had the ‘what if’ in the back of my mind if we hadn’t removed it and tried prior to pursuing IVF. So I’m glad I did. The only drawback is it did negatively impact my ovarian reserve. But it is what it is at this point.