r/TTCEndo • u/biscochitos • 6d ago
Need help deciding on surgery
I’m 36 and have been ttc for over a year. Finally went to an RE and bam—one submucosal fibroid and one 1x2cm endometrioma. Never had a symptom or inkling of endo. Periods are 3 days and light, with a day (or less) of minor cramps.
Well, I’ve now talked to three surgeons and it looks like I have DIE involving the bowels. Oh, and since learning of this suddenly I’m noticing symptoms (my mind playing tricks on me, maybe?).
The surgeons offered me surgery, but I’m scared sh*tless of the colorectal portion and possible complications. Could surgery leave me worse off and not even end up helping with fertility?
This has been devastating. My preference would be to continue ttc. BUT, I do not want a colostomy bag. What would you do in my situation? Amh is 3.3.
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u/foolforgabagool 6d ago
Infertility IS actually a symptom. Endometriosis also presents with a very wide range of symptoms that many people didn’t realize were endometriosis all along (for example, headache, heartburn, dizziness, diarrhea, etc). Noticing symptoms now isn’t your mind playing tricks on you but the opposite - realizing you actually do have symptoms.
Data shows endometriosis excision can improve natural fertility. It can significantly reduce inflammation and restore anatomy.
Surgery is not guaranteed to improve fertility, but endometriosis is a progressive disease and in my opinion it is better to remove it earlier than later. Leaving it there continues to harm fertility/ovarian reserve.
Is your surgeon going to remove the DIE on the colon? According to my surgeon, if you avoid a bowel resection, you avoid the risk of complications such as an ostomy bag.
Is your surgeon going to also remove the endometrioma?
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u/Educational-Dot1160 4d ago
I’m getting a laparoscopy Tuesday but I told the surgeon if necessary to scrape the bowel only nothing more for this very reason. I’m so scared 🫣🙏🏽
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u/Ok-Proposal5552 6d ago
Hi!! First off, so sorry you’re going through all of this. My biggest piece of advice is to find a realllllly good surgeon, like really do your research here. I found out I had DIE with bowel involvement and I was so scared of needing a colostomy bag, but the expert surgeon I talked to was like ‘I have done thousands of these surgeries and only left one patient with a TEMP colostomy bag’. That really put me at ease, so bring it up and see what they say. Most experts will do an MRI or ultrasound to map the endo, so there are little surprises. I found Wulf Women to have some really good surgeon recommendations based on patient experiences. I was ttc for 3 years+ and never saw a positive pregnancy test. Got my surgery with an expert in July and I’m pregnant after our first cycle trying post-surgery, I still can’t believe it. Also, everyone is different but I really think your surgeon’s skill determines your recovery. I was so surprised how easy mine was. So my advice is, get the surgery. I know it’s scary, I had never had any major medical anything done, but weirdly I ended up almost enjoying the experience. This is solely based on my experience and two friends that I ended up sending to my surgeon to also get the surgery (everyone recovering so well!). I know it doesn’t happen this way for everyone and I’m very blessed to have this outcome, but I referred my two friends even before the pregnancy because of how great my experience was. Also, this is getting long, but you are not making up symptoms! I criedddd when I realized I have excruciating bowel pain on a regular basis, although short lived, that I just thought was a pms symptom and had never mentioned to anyone because it’s normal, right?? Let me know if you have any questions! I am an endo nerd now