AW - Endometriosis Question

Lizzyrella · June 2014

Hi everyone,

I just had a lap and selective HSG on Monday. My tubes were clear, which was great news, but the doctors found extensive endometriosis on my right tube and removed some other spots of endo on my uterus, bladder and right ovary. The endo on my right tube is actually restricting my tube's ability to move, and it is stuck in an awkward position (also b/c of a pocket in the protective layer of tissue). Because of the extensive nature of the disease in that area, the endo could not be removed via laser treatment. Instead, I would need another surgery with a robotic tool to remove the endo and free up the tube. My doctor is concerned about the endo possibly blocking my tube from the outside and/or contributing to a higher risk of miscarriage (perhaps even as high as 50 percent?). At this point, we have the option of trying for a few months before having the surgery or abstaining until the surgery. I think we will TTC for a few months and if nothing happens, we will pursue a second surgery. But I was hoping someone here may have some insight or experience with endometriosis and its possible connection to miscarriages. Any advice or experience would be helpful. Thank you!

Lizzyrella · June 2014

@snegde - My tubes are both open right now, no blockage at all. My doctor was able to slide catheters through both tubes to improve the flow, so I am not worried about blockage at this point. The concern I am having is about possible miscarriage as related to the endometriosis.

(Warning: Living Child Mentioned)

I am seeing a Naprotechnology doctor at the moment rather than a traditional RE. I have met with an RE prior to becoming pregnant with my daughter. At that point, we were told IVF was our only option. We got pregnant in February while waiting to start an IVF cycle in May. Our only other pregnancy was our loss in March/April of this year.

O2girl · June 2014

I don't have endo I have adeno and while both conditions are different they both happen to be endometrial tissue that is growing somewhere that it shouldn't be.....that being said my RE has me doing GnRH agonist treatment to suppress my adeno. Have you tried this type of therapy to suppress your endo?

Lizzyrella · June 2014

@O2girl - We weren't sure what we were dealing with until the lap. I had no symptoms of endo aside from a suspicion of some sort of scar tissue based on my last HSG. So I basically just found out I had endo on Monday after surgery, so I am still processing all of this information. I will ask my doctor about the options though, thank you for your advice.

O2girl · June 2014

@Lizzyrella‌
My diagnosis is pretty new also. I also didn't/don't have any symptoms --ZERO..... But alas it has presented issues

I was on depot Lupron for my last embryo transfer. I will be on it again before my next transfer. It works by suppressing estrogen which in effect suppresses the adeno (or in your case the endo)..... This allows the endometrial tissue to quite down. There is a ton of info on the internet about Lupron to treat endo if you are up to reading about it. Also maybe mention it to your doc....maybe it could be a good adjunctive therapy to try to relax the adhesions you have before you have another lap to resect the adhesions? I did read quite a bit that Lupron is often used before removal to make removing the adhesions less traumatic on the other organs. Best wishes for success!

ashlee113085 · June 2014

I don't have any experience with this, but my SIL has had a few surgeries to try to clear her endo. She was unable to get pregnant on her own, and they are currently going through IVF. Thinking of you and sending good vibes your way as I know that this can be stressful.

megrae12 · June 2014

Do you have a lot of "active" endo? I am fairly certain that if they do the surgery to try get the endo off that tube, you will end up with scar tissue and adhesions. I say this from some personal experience. My biggest concern from that second surgery will be possibility for scar tissue, etc. I have stage 2 endo but not a lot of "active" cells at the moment. Was your endo just mainly located on your tube or did you have it anywhere else?

Lizzyrella · June 2014

Thanks for all of your thoughts and advice. I appreciate it!

@megrae12 - I will ask if it is active when I see my doctor. I got the idea that she thought it could worsen over time, so that might mean it is active? They found spots of endo on my uterus, bladder and right ovary and removed all of that via a CO2 laser. The endo on my tube was too much to use the laser for, so it is still there. Scar tissue is a concern of mine as well. I felt comfortable with the laser, but I need to do more research about this robot they use. They did not tell me the stage, so I need to talk to my doctor!

erinel · June 2014

I don't have any real advice for endo and miscarriage, but I have stage IV endo, and was able to get pregnant with minimal intervention (just Clomid and progesterone for my short luteal phase) and carried to 35.5 weeks with a healthy, easy pregnancy, so it is possible.

Lizzyrella · June 2014

Thank you for sharing your story, @erinel.

I am sorry to see so many of us facing this!

Campow83 · June 2014

I've had severe endo since 16. At 24 I had my 1st lap surgery. I married my HB when I was 29 and we tried for 2 years with no success. Last June I had my 2nd lap and they told me to try on our own to see what happens. I got pregnant in September but mc @ 2 months. Got pregnant again in Jan of this year, again mc @ 2 months. My tubes are clear and they told me endo won't cause miscarriages but It makes me wonder if it's played a role in my losses.

Lizzyrella · June 2014

@Campow83 - I am sorry for your losses, thank you for sharing your story.

MrsG80inTN · June 2014

Lizzyrella - my very dear friend had endo that had to be removed via excision that the laproscopy couldn't get. Her doc couldn't remove all of hers during the initial surgery either. I would recommend trying to bump up the surgery if possible b/c I know with my endometriosis that wasn't even quite that bad I tried for 3.5 years and never got a BFP until after the removal. Best of luck to you.

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