Stage IV Endo questions...

BeckyM613 · August 2014

So, I have mentioned before that I have a 5ish centimeter endometrioma on my left ovary that showed up on an ultrasound. I also read that having an endometrioma (no matter the size) automatically qualifies you as stage IV endometriosis. Basically, I went from not even knowing that I have it to having the most severe form of it. As I'm sure many of you can relate, that's a hell of a concept to wrap your head around. I was wondering...

1) ...if anyone else dealing this stage IV endo has gotten this far with NO pain and no symptoms other than slightly heavy periods?

2) ...if it would be at all possible to have a large endometrioma and not have endometriosis/damage all over everything else?

3) ...if there is any indication that the endometrioma hasn't completely destroyed my ovary if my baseline FSH is in the normal range and ALL other tests came back 100% normal?

I apologize if these are stupid questions but I am new to the endo club and I just don't have the knowledge that many of you women do. I am out of town for two weeks and although I have an MRI and a visit to the OBGyn coming up, I have every intention to get a referral to an RE, ASAP when I get home. If anyone has any good websites/books/or info on endometriosis please let me know. I Google everything and, as we all know, not everything on this internet is true. I want to make sure that I am getting good, reliable information.

On a side note, it was brought to my attention that my avatar switches randomly. If it shows anything other than a yoga chick, please comment below and let me know. It would appear to be an issue with the website and I would like to get it resolved for my profile. Trust me, there is NO reason for me to have a prego chick as my avatar.

Oh, one more thing... I went out with some friends tonight and "baby" was the new "b" word. They understand my situation and were more than happy to spend an evening out, enjoying some beverages, and not saying the "b" word. It was a good time.

I know this post is all over the place, but it's been that kind of a week.

Best of luck to all of you!

Champs28 · August 2014

I second above poster. I had stage three with zero symptoms before because of BC. I still don't get my cycle (different issue) but they were able to remove all the Endo with a lap

BeckyM613 · August 2014

Thank you all so much for the fantastic information! I don't remember where I read that an endometrioma automatically puts you at stage IV but it is great to hear that's not always the case. I guess I should have figured that being on BCP for 7 years probably masked any early stage symptoms.

Thanks again!

BeckyM613 · August 2014

kikimo327 I also read on other forums that Clomid is not good if you have endo. Have you ever heard this or did your doctor explain that it was perfectly fine? I'm sure your doctor knew what they were doing, I have just read conflicting information.

Thanks again!

Radiantly · August 2014

Hmm interesting @Rcvb22 about how it could be problematic for ttc if you have laps. Is this true or do you mean just multiple laps? I am in similar position as OP in that I haven't ever thought of my periods as being overly heavy or painful but then again I don't have much to compare it to. Not much difference from when I had my Paraguard IUD and after removal feb 2013.

I have a 1.8 mm endometriuma in my right ovary and my right tube is blocked. My RE said he'd like to do a lap and I said give me a few more months naturally trying and then let's revisit the lap for November.

My acupuncturist says she can heal it and also I've been doing Arvigo maya massage daily on my abdomen and uterus area to stimulate blood flow and also running my hands up the lymph nodes on upper thighs/ovary area.

Last month I O'ed on my left side and had the HSG so I was oping for a BFP but alas. My period started in brown spotting and then was a little clumpy. I assume from the HSG. I'm now in fertile week and haven't had any O pains yet sometimes I get twinges. It's different every month.

Keep us posted. Curious if any BFP graduates could comment as well. Would love to hear success stories after endo! Lap or not?

ttuprincess · August 2014

***siggy warning***

Radiantly said:

Curious if any BFP graduates could comment as well. Would love to hear success stories after endo! Lap or not?

I am mobilie so I can't see OP's siggy to see if grads are welcome so I hope it is okay if I respond. I noticed @Radiantly‌ asked for success after endo stories so I thought I would chime in.

I had a lap and was diagnosed with Stage 3 endo but was borderline stage 4. I did not have the "typical" symptoms but after the lap I realized how many problems I had that were because of the endo -- mainly bladder and stomach problems.

The lap removed a lot of my endo but I ended up having to do 6 months of Lupron Depot to help get rid of the places they couldn't reach with the laser.

I had success after endo. It takes time to do the lap and any other endo treatments such as Lupron but I think it was so worth it. The Lap also helped my RE know that the majority of my endo was on one side and caused some major damage to that ovary so when they monitored me on my treatment cycles they knew to try to get a good follie on the other side to give me a chance.

Good luck to all you ladies!! If you have any specific questions I can help with, feel free to message me.

cmw06c · September 2014

I'm getting married in 2 months, so fertility and babies have been on my mind. I noticed I was experiencing extreme cramping during my cycles and dark brown blood so I made an appt with my gyno. After two ultrasounds and a lap I was diagnosed with moderate to severe endo (stage3-4). My right ovary is bonded as well as adhesions and scarring on the right ovary, a chocolate cyst on the right, endo on the bladder and bowel and a little on the left that was forming.

My advice to you is to get the lap surgery if you haven't done so this far. That's the only true way to know the severity and if it's spread...

I was not on birth control consistently and did not have that much pain until shortly before visiting my doctor. Severity of pain is not a correlation to the stage of endo. You can have mild endo and have extreme pain.

I also suggest that you try acupuncture, exercise, & a healthy diet to help with the pain and help fertility. I've stated reading the book The Body Ecology by Donna Gates. Her book talks about the effects of candida (yeast) in the development of diseases and disorders such as endo. And I've heard about good results from ppl who have tried these methods.

Do as much research as possible, but give yourself a break sometimes. Seek fertility doctors and those who specialize in helping women with endo.

I try to stay positive which helps Also, enjoy the trying

BeckyM613 · September 2014

Thanks for all of the great info! I don't mind hearing some good news and success for women who have gone through endo. It's encouraging to know that there is hope!
I am still visiting family but I can't wait to get home and really start getting to the bottom of all of these issues!
Good luck to you all!

amyalbert · September 2014

Hi, chiming in with my thoughts as someone who had a big endometrioma in each ovary...

1) ...if anyone else dealing this stage IV endo has gotten this far with NO pain and no symptoms other than slightly heavy periods?

Yes. Isn't it crazy that you can have stage 4 endo with no symptoms? In my case, I had slightly heavy periods -- which were sometimes a bit painful, but at the very worst I'd only take advil once per cycle (so clearly not that bad). I did start to notice that my periods would start with a few days of really brown/dark blood before turning red. I also had bad back pain that lingered for months. Nothing that would really cause much concern but I got an U/S that showed a big endometrioma in each ovary (3+ cm on my left, 7+ cm on my right). It made me really mad that I could be relatively symptom-free and have stage 4 of a disease. Then again, I also think about the women who suffer from horrible pain with endometriosis and I realize both scenarios are not ideal.

2) ...if it would be at all possible to have a large endometrioma and not have endometriosis/damage all over everything else?

I think this is possible. I was talking to one of the fellows at my surgeon's office and she made it out to seem like they had seen this before. However, I think most people with endometriomas also have adhesions elsewhere. I certainly had adhesions and endometriosis throughout when they did my lap.

3) ...if there is any indication that the endometrioma hasn't completely destroyed my ovary if my baseline FSH is in the normal range and ALL other tests came back 100% normal?

I'm not sure what the answer to this is, but I'm definitely inclined to think there's a good chance your ovary is still ok (perhaps not as perfect as before, but no need to assume it's "completely destroyed"). I know it's terrifying that there is something inside your ovary that is larger than the ovary itself. But a good surgeon can remove the endometrioma and still preserve a lot of your healthy ovarian tissue.

In my case, both of my ovaries still ovulate -- even the one that had a 7cm endometrioma. To be honest, I know that the surgery lowered my ovarian function. I had my AMH tested before my surgery and afterwards (at my own expense), and the surgery definitely lowered it.

I don't think we can really know the quality of our eggs though, and how the endo might have affected it. In my case, I know I have low-ish ovarian reserve. I am hoping the quality is ok. If you ask me in a week, I'll probably know better (undergoing my first round of IVF -- I'm producing an OK number of follicles and I suppose if they turn into embryos then I'll get a sense of the quality).

Feel free to reach out to me. Hang in there. I know how utterly terrifying this is, and I'm sorry you're in this position. I'd focus on finding the best surgeon you can -- someone who deals with endometriosis and performs lap surgeries frequently and is very used to seeing Stage 4 cases. Good luck!

emmuffy · September 2014

I have what could be endometriomas, but no symptoms. My RE said I could have a lap to diagnose potential endometriosis, and then do more IUIs, or just move to IVF and bypass any potential problems. I've gone with IVF.

Stage IV Endo questions...

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