Hyster+Oopherectomy vs Lupron/Orlissa for endo pain?

[ciaotuffy]

I'm new the group and have been reading all of your helpful posts about endo, surgery, pain relief, etc. I wanted to get some feedback on hysterectomy+oopherectomy for severe endometriosis and recurrent endometrioma or would taking Lupron or Orlissa be a better way to go? I'm also wondering for those who have had the surgery, how have the longer term side effects been v the pain. I know that osteoperosis, heart disease, joint pain, depression, etc come with removal of ovaries so I'm just wondering how bad it is v natural menopause? Are the "menopausal" drugs like Lupron a better option, but I know these are only temporary so may not really solve the situation.

Just some background, I'm 49 had breast cancer and was on tamoxifen for 4 years. I know tamoxifen increases estrogen to endometrial region so that was bad for me and I stopped taking it 2 months after my surgery. Gyn found endometrioma 2016 but just watched and waited til it got much larger by 2020 and based on her concern of ovarian cancer, she suggested I remove everything at that time. I found an endometriosis surgeron/specialist who said he could remove the endometrioma and endometriosis but still save my ovaries and uterus. The pain was starting to get so bad so I went ahead with laparoscopy in Oct 20. Recovery from that surgery was pretty good for me, back on my feet and doing things after 2 weeks. I felt great for 2 months, but then pain came back. I was able to manage with ibuprofen and tylenol the first time. I saw my surgeon who did an ultrasound and saw a 4cm cyst. He gave me an ovidrel injection to stimulate the ovary to release, in hopes it would release the cyst but it didn't. He suggested Lupron to possibly shrink or keep the cyst from growing further. I was thinking on that one. Just a few days ago, the pain was so excruciating that I was lying on the floor throwing up from pain (my husband said I was screaming) so he took me to emergency. They gave me morphine, ultrasound which confirmed 5cm endometrioma and sent me home to consult with my gyn/surgeon.

Now I'm trying to make the decision what to do next. The pain was absolutely unbearable. I don't think anybody who hasn't gone through it fully understands how bad it is. I told my husband that I just wanted to die or have somebody just rip my insides out, it was that bad. And it seems like this cyst is growing quite rapidly so I don't want to wait Too long.

My first thought is that I'm already 49, on the cusp on menopause so it's probably fine to just take everything out now in hopes that the endo will not come back and I'll have pain relief and no fear of any cancer down there. But I read about side effects of surgical menopause and get scared.

Then I read about Lupron and those side effects sound horrific. If that's only a "band aid" drug that I can take only temporarily, why even bother if I will need a surgery any way? Or would it be worthwhile to try it until I get into natural menopause hopefully in a few years? Does endo get better once you're in natural menopause? Or have people had to have hyster-ooph even after in menopause? I worry that if I don't have ovaries removed, the endometrioma will keep growing or even if I just remove the endometrioma, it will keep growing back next time.

If anybody has gone through these choices and have any advice. Or gone through the surgery and have had success (or not) I would love to hear. I have found comfort in reading all of your stories and seeing your love and support for each other. I think I could use a little of that right now. Thank you!!!

[Sassy123455]

Hi there

So sorry to hear that you’re having such an awful time x

I don’t know if my story will help, but just to let you know I’m having surgery on the 01/04 to remove a large endometrioma, both ovaries and both Fallopian tubes.

I just turned 50 in Dec, and the surgeon basically said due to my age my ovaries are almost retired so may as well remove them! I haven’t had a period for about 12 months so I’m technically post menopausal??

I’ve had a lap in 2012 to remove cysts and the recovery was good, but I’m a bit apprehensive this time as I’m older and also more is being removed.

I’m thinking longer term it’s probably better to have my ovaries/Fallopian tubes removed as I believe there is a slightly increased risk of ovarian cancer.

I was never offered any hormonal medications after my last lap so I’m sorry I can’t share anything on that.

I really hope you find a solution that works for you.

Take care, hugs x

[ciaotuffy in reply to Sassy123455]

Thank you so much for your reply and sharing your story. I'm waiting on a consult and then to schedule surgery. Did your dr tell you that the side effects of surgery would be less since you are already in/almost in menopause? I'm just wondering if having ovaries removed will be easier as you get older? I think I'm in the same boat as you, being 49, that if I take out my ovaries and everything, I will have a better chance at the cysts/endo not coming back. Wishing you all the best for your surgery and speedy recovery. Please let me know how you're doing. Thank you!

[Natasha70 in reply to ciaotuffy]

So I’m all done my pain in my back I had for so long they explained it was coveredIn endometriosis so bad explains all

Doing ok tho my blood

Pressure been so low 4pm yesterday they now giving me blood transfusion so got here 7-00 Am yesterday went down at 9-00am and out of surgery at 4-00pm doing gine

[ciaotuffy in reply to Natasha70]

Thank you so much for your reply and glad that you are doing ok. That is a long surgery. Wishing you all the best for a speedy recovery and pain free future!

[Natasha70 in reply to Sassy123455]

How did you get on xx

[ciaotuffy in reply to Natasha70]

How are you recovering after your surgery? I hope things are going well and not too much pain. My surgeon recommended another surgery soon before this endometrioma gets Too big (seems like it's growing 1cm/month yikes!)- either conservative where he could just remove the cyst and leave some of my ovary or do a total hysterectomy now, remove uterus +ovaries in hopes to keep the endo down and not return. I'm totally scared but think that logically, given my age, it's probably best to remove everything now so that I won't likely have to go through yet another surgery. If I leave the ovaries, there's a big chance (given the cysts are growing so aggressively) that I would still be in pain in near future and then need another surgery to remove endo yet again.

Let me know how you feel about your procedures. How many surgeries have you had before your total hysterectomy? Any advice on how to decide? Thank you for your advice and support!

[Natasha70 in reply to ciaotuffy]

Hi there as days go on I’m feeling ok now not as bad as I really thought there is Discomfort but regular meds keeps under control when open me my endometriosis covered everything from it being left so long hence why took 7hrs they had to remove all that before could get to hysterectomy then in same surgery done it all had left is cervix was going but to dangerous to take they same there was endo they couldn’t get off but on a negative note downside sitting today no appaitite but slowly getting there long way to go I no I do not regret one bit hope this helps xxx

[Natasha70]

I will also let you no I have mine 30/3