Doctors recommend hysterectomy even though symptoms aren't terrible
Hello, I'm new here.
I'm in the reverse situation of a lot of people on here. I'm being told I need a hysterectomy even though my symptoms aren't really that bad. I had a surgery to remove endometriomas from both ovaries along with a C-section 14 years ago and plodded along ever since. About a year ago I went to the ER because an endo cyst on my right ovary burst. They did a bunch of imaging and it's a mess in there. I have very large endometriomas on both ovaries again, they're fused to my uterus and the uterus is stuck to my rectum. Endometrial tissue has also invaded the scar from the C-section I had 4.5 years ago.
The ER doctors sent me to a surgeon at their hospital who is a FACOG and he immediately recommended: Robot-assisted Total Laparoscopic Hysterectomy, Bilateral Salpingo-oophorectomy, Excision of Endometriosis, Excision of Abdominal Wall Mass, Cystoscopy. He didn't discuss any other options with me. I saw another doctor more recently who came recommended by my sister's surgeon (she also suffers from endo). He said he'd do the same but would conserve an ovary if he could.
The first doctor said he wanted to do the salpingo-oophorectomy because it reduces the risk of ovarian cancer. Or actually he didn't tell me that but i read in in his post-visit notes.
In any case, I know I need surgery to remove these huge endometriomas and separate the adhesions but I don't understand why my whole uterus has to come out. I haven't been given any other options but then I've only discussed it with two surgeons. My OB/Gyn (the one I had my most recent child with) move out of state and I am so confused.
I'm turning 46 this month I have two kids and I'm done so I'm not concerned about fertility. I do have bad PMS and heavy periods but they've not been terrible since my son was born 5 years ago. I am worried about ovarian cancer because I've read recent papers that recurrent endometriomas especially large and bilateral ones are associated with it. I also am afraid one is going to burst again which is super painful.
OTOH I am also very worried about the risks associated with hysterectomy before menopause (including increased risks of dementia, anxiety, cardiovascular disease and thyroid cancer). These are all things that run in my family. As well as risks of complications. My sister has experience a lot of them and still has problems with endo post hysterectomy.
Sorry, this is a bit rambly but I feel like I'm being pressured to remove my uterus and I don't understand why. I feel like there's a significant risk that my quality of life would actually get worse If I did that. I also don't understand why removing the endometriomas and adhesions laparascopically and suppressing the growth for the few years remaining until menopause wasn't even suggested. I emailed the second doctor to ask and he said he'd discuss it at our next appointment (at the end of this month) but at that time I think I basically have to decide.
I wonder what you all think and if anyone knows any endometriosis specialists in the Seattle area who aren't just surgeons that I could talk to. These doctors told me what they wanted to do but neither really explained to me why I needed to do it or why there weren't any other options presented. I feel really anxious and pressured and I need some help. Any guidance at all would be appreciated.
- firstly, I am so sorry to hear of everything you are going through and dealing with. It certainly has been a journey for you and you deserve so much relief dear warrior. You also deserve more options than what your doctor is saying. At the end of the day, it is your body and you have the final say on what the next steps will be. I know it is not easy to keep finding doctors, but I would suggest getting another opinion. Getting 4 other opinions if you needed. I think your best bet in this situation would be an endometriosis specialist, at least worth giving it a shot. I don't know if you have checked out Nancy's Nook Facebook group but she does have a list there where you can search for an endometriosis specialist in your area or surrounding area. https://www.facebook.com/groups/NancysNookEndoEd/
Hopefully maybe you can find one there. As for your next appointment at the end of this month.. I would continue to express how you are feeling. You do not and should not have to feel pressured into having a hysterectomy. You certainly have options before jumping right to hysterectomy. I will say, if that does seem to be the option right now, maybe they could leave both ovaries so that you don't go into menopause just yet. Another thing to think about, I do hope they made it clear that even though you may have a hysterectomy, endometriosis can still grow back. So I just hope they do make every possible option and scenario made clear for you.
I understand your fear of ovarian cancer as well. And another cyst bursting (you are so right, they hurt so badly when they burst!) At the end of the day, you have to do what you think will be most helpful and safe for you and your body. Maybe hysterectomy is the next best option, maybe it isn't. That's what makes this disease so hard. 🙁 I think though, it does not hurt to keep expressing your thoughts to your doctor now, asking for other ways to handle this first, and also, getting more opinions from other doctors.
It's a hard decision for sure and I am so sorry you are put in this position. I know you will be able to decide what is best for you. And know, we are here for you too. Please reach out anytime and do keep us posted on how everything is going. Sending you good thoughts, big hugs and all the strength I can <3 -Kimberli (advocate)
This sounds really frustrating to be told you need such a big surgery without an explanation as to why. I think the way you explained things here is very clear, and you should bring all of these questions to your doctor. Perhaps even writing a letter and reading that at the appointment (i get very nervous and forget what I want to say). And something I always tell myself is that my doctor works for me, or, at the very least, we’re partners. You should never feel pressured to get a surgery you don’t want. I think your concerns are valid, and I have some of the same worries about a hysterectomy (which doctors have suggested to me very cavalierly when I asked for period-pain solutions other than hormones). I’ve also felt pressured to get a hormonal IUD despite voicing my concerns about serious issues I’ve had with depression and other mood problems on hormones in the past. These worries were dismissed by my OBGYN, who made me feel as though I HAD to be on hormones or else my endo would spread, which didn’t happen. I left that doctor to see an endometriosis specialist 3 states away who explained everything to me about why he would do something and told me that it was up to me to decide what treatment options were okay.
I can’t speak to your medical issues directly, but the reasons I’ve been told that a hysterectomy might be needed is if I ever have severe bleeding that threatens my health (which hasn’t happened). With removal of the ovaries, I’ve been told that endometriomas raise the risk of things like ovarian torsion, which can be life-threatening. Luckily for me, my endometriomas didn’t come back after my second laparoscopy/ablation (this was before I knew about excision). But my third doctor, an excision specialist, did say he would consider removing my left ovary (the one with all the problems), if I had endometriomas present, which I didn’t. He also told me he might remove my fallopian tubes/ovary if there were signs of pre-cancerous cells (there weren’t).
While I can’t recommend a doctor in the Seattle area, if you can’t find someone close, I’d suggest booking a consultation with an endometriosis specialist anywhere. Many will take a look at your tests and give a second opinion, even if they don’t treat you directly. The places I’d suggest looking for someone are Nancy’s Noook website or Facebook group and the iCareBetter website. Wishing you luck finding the answers you need! — Keri (patient leader)
Thank you Kimberli and Keri for your support. To be clear the doctor I'm seeing right now is an endometriosis specialist. He is very experienced as a surgeon and I trust him to do my surgery whatever that may be but most of what he did in our first appointment was explain the procedure that the first doctor had ordered in great detail. I tried to express my confusion at why I even needed it but I know I didn't communicate very well.
Also, I did send him these concerns via the patient portal and I got a reply from his MA saying he'd address it in the consultation. I will definitely write down my questions as suggested because I do get flustered and I'll update you after my appointment.glad to hear your doctor is indeed an endometriosis specialist! I do hope you are both able to agree on what the next best thing for you will be. And I do hope he listens to your concerns and is able to explain everything in full detail. I do agree, write down all your questions you have and bring them to your next appointment. I did that for my last post op with my GYN and just handed him the list and was like please, let's go over all of this. And he did and it was so helpful. I get flustered and forget all my questions/never ask them too if I don't have them written down!
Please do keep us posted on how your appointment goes. And I want you to remember this, if you are still not fully happy with what he is telling you or feeling comfortable with what he suggests next, it is still okay to seek out other opinions. <3 Hugs! -Kimberli (advocate)This all sounds promising! Good luck with the appointment, and I definitely look forward to hearing how things go! - Keri (patient leader)
Hello, all. I promised an update on my situation.
I had a meeting with my doctor today and to his credit he listened to my questions very carefully. He said that he regularly performed similar surgeries without hysterectomy for women trying to preserve their fertility so he would be happy to do that for me as well if that's what I wanted. Though I do have to consult with the general surgeon about the big adhesions in my abdominal muscle before we finalize the plan for surgery. The right ovary has to be removed because it's the one with the much larger cyst that's stuck to everything but I expected that.
Overall, I feel quite relieved not necessarily that I don't need a hysterectomy but that I feel my doctor actually listened to me and took my individual circumstances into consideration.
I wanted to thank you all again for your support and guidance.
I'm really glad to hear that your doctor listened to your concerns and took them seriously! We all know how huge that is and how rare it can be to receive support like that. I hope the consult with the general surgeon goes equally well and you'll have all the information you need to make the best decision you can. ~Katrina, Endometriosis.net Advocate
