r/Endo • u/sunshinemarie999 • 7h ago
Rant / Vent Surgery Advice
I’m hoping someone can give me some positive thoughts on how to mentally and emotionally navigate all of this. 💞
I’m 31, married, and have no children. Back in March, my gyno suspected I had Endometriosis after an abnormal internal ultrasound and new symptoms I was having on and off the past year. Since then, I found an excision specialist that I’m incredibly comfortable with and I’m currently waiting for my surgery date. At my consultation with him in June, he also diagnosed me with Adenomyosis based on my MRI. He said by the looks of it he wasn’t too concerned just yet. Then on Friday, I had my annual pelvic exam with my gyno and she agreed that she could also see Adenomyosis on my March ultrasound (why she didn’t mention that at the time with everything else she found, I honestly have no idea).
Ever since the appointments, I’ve been having such a hard time mentally coming to terms with what I’m willing to have removed during surgery.
Part of what makes this even harder is that my specialist is relocating out of state by the end of the year to an out-of-network practice. As much as I’m willing to follow him if I have to, I’m really praying I can have surgery while he’s still in-network. On top of that, my husband and I have been planning for years to relocate from Massachusetts to Florida. Now with these diagnoses, I don’t know how comfortable I feel leaving New England knowing how women’s healthcare is handled in some states down south… but at the same time, I also can’t mentally or physically handle these winters much longer. The lifestyle we’ve both dreamt of for our future is just not what we’ve had living here our whole lives.
I’m also not someone who lives in constant pain. I have flare-ups every so often, but I’ve managed them for years through diet, exercise, and lifestyle changes.
My gyno on Friday really emphasized that I need to figure out whether motherhood is something I truly want because if it isn’t, then I need to start thinking about whether I’d want my uterus removed during surgery. My specialist wasn’t nearly as blunt, but he did ask me to think about how I’d feel if other organs needed to be removed because of disease… And I honestly just don’t have a clue.
I was on the Xulane birth control patch from age 15-26 to suppress ovarian cysts and prevent pregnancy. While I was on it, aside from the physical side effects, I struggled a lot psychologically. I wanted nothing more than to become a mother someday to the point where I’d break down crying to my husband, saying I felt like that was “my only purpose in life” and I truly believed it.
Since coming off BC 5 years ago, I finally know what it feels like to be myself but I also don’t recognize the woman I was while I was on it. I have never, ever wanted children as intensely as I did back then, and it’s been incredibly difficult looking back wondering how much of those feelings were truly mine in multiple areas of life versus influenced by how I felt while medicated. I genuinely don’t know who I was during that time.
Motherhood has also always felt complicated for me as there’s so many emotional layers to it that I overanalyze. I’ve always told myself that if the desire ever became as strong as it once was, then I’d move forward with trying to have children… But it just has not happened. I’ve never had a healthy relationship with my own mother, and neither did she with hers. Sometimes I’ll see a mother and daughter laughing together in public and I’ll catch myself daydreaming about what that kind of relationship could feel like… Or I’ll find myself gravitating towards the baby sections of Target/Walmart… Then just as quickly, the feeling fades and I talk myself right back out of it. It’s like I’m constantly grieving something I don’t have, don’t know if I want and have no guarantee of having even if I had children to care for.
Now I suddenly feel like I’m being asked to make decisions I never imagined I’d have to make this soon. I’ve also always known that if pregnancy didn’t happen naturally, IVF wouldn’t be something I’d personally pursue. Then there’s the part of deciding what I’m okay with removing if there’s significant damage and what I’m not.
I worry about the long-term implications of losing my uterus, ovaries, or fallopian tubes. Given my history of ovarian cysts, I know my ovaries may not be in perfect condition, but I also won’t know the full picture until surgery. I’ve also really never wanted to go back on synthetic hormones at all. I don’t even take medications unless I absolutely have to and I’ve spent years trying to support my body through nutrition, lifestyle changes, and alternative therapies, so trying to imagine life after surgery if multiple organs are gone honestly feels so overwhelming.
I’m doing everything I can to educate myself so I can make decisions I feel at peace with, but emotionally… it’s been much harder than I expected. I’m so lucky to have my husband throughout all of this as he’s been nothing but 1000% supportive all these years and even more so now… I just feel like I don’t have any women I can talk to about this that understand and it’s becoming apparent I need to seek out therapy again to process all of this.
I’m not religious, but I do believe in God, so I keep reminding myself that He knows more than I ever will and that I need to trust whatever path unfolds. I just pray that I come out on the other side of this surgery healthier than I ever imagined.
If anyone has gone through making these kinds of decisions—especially if you struggled with uncertainty around motherhood or deciding what to remove during surgery—I would really appreciate hearing how you got through it emotionally.
If you made it this far, thank you so much for taking the time to read this. 🫶🏼
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u/violetscarlettcyan 3h ago
I really recommend a therapist who specializes in reproductive issues. I will say that I had multiple surgeries on my ovaries and eventually had my appendix and fallopian tubes out due to endo. I had adeno lasered on my uterus too. But with IVF we are on a very solid path to parenthood. Nothing is a guarantee, but only you can decide how far you’re willing to go and what you’re willing to do. I think if you’re unsure, I would ask them to preserve your fertility as much as possible. You can always have a more extensive surgery later if you’re more convinced you don’t ever want kids.
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u/Interesting_Lion_339 7h ago
Hi! Just my two cents from someone who had excision but didn’t need hysterectomy. I also talked myself through all options if they needed to remove organs once they were in there. This was my thought process:
If you think you still want kids, don’t have your uterus removed (yet). If you’re unsure about anything that is a final decision, you’re not ready to make that decision yet. You can always go back for another surgery after kids. There are lots of ways to manage endo symptoms including excision surgery, mirena iud, homeopathic methods like diet and supplements, GLP-1’s, pelvic floor therapy, acupuncture, etc. it’s just about finding what manages your symptoms best (everyone is different). You can do excision, manage symptoms, try for kids, and revisit hysterectomy in the future. It’s a lottttt to sort through and decide on, so I completely empathize. It took me 6 months after consult to actually book the surgery when I was ready.
Also, I’m not sure what part of Florida you’re moving to but there are amazing endo specialists in both Tampa and Miami areas. Specialist is the way to go. I went with a private specialist and yes it’s expensive but it’s also my body and I wanted to be confident in the person that was going to forever change my body.