Anybody had multiple surgeries to remove endo, then total hysterectomy?

[ciaotuffy]

I'm trying to get some advice from any ladies who have had multiple laparoscopies to remove endometriosis and then ended up eventually having a total hysterectomy (uterus + ovaries removed). How did you decide when it was enough and then decide to have the hysterectomy? At what age did you decide on the total hysterectomy? Do you wish you had done it sooner instead of going through multiple surgeries prior? How was recovery after your earlier surgeries compared to after hysterectomy? How were the side effects after ovary removal- hot flushes, night sweats, weight gain, etc? How have pain levels been after total hysterectomy?

I am turning 50 this year, I had my first lap in Oct20 to remove a large endometrioma & part of my left ovary and severe endometriosis on my right side, removed tubes and had uterine ablation to reduce my severe bleeding. I wasn't allowed to be on any hormone treatments due to breast cancer diagnosis a few years ago. I felt great for 2 months after the surgery. Luckily, recovery was pretty good for me, back on my feet and getting around nicely after 2 weeks. After the 3rd month, I started having some cramps, then severe pain and heavy bleeding the next month- back to the surgeon who saw an endometrioma growing on the right ovary. I couldn't believe that something had grown back so quickly! (It might have been because I was on tamoxifen for my breast cancer which sends more estrogen to endometrial area) 5 months out, I was in so much excruciating pain (throwing up on the floor pain) that my husband took me to emergency where they said the cyst was now 5cm, so it's been growing 1cm per month basically. So the surgeon think it best to have another surgery to remove the cyst before it gets Too large. That leaves me to my choice now- do I just have a total hysterectomy to remove everything now, given my age and I'm close to menopause and hopefully w no estrogen, it will keep the endo at bay. Or the surgeon suggested that he could be more conservative and save a sliver of my ovary so as not to go into immediate menopause. But I worry that since the endo seems to be growing so aggressively, I would likely need a 3rd surgery if I don't have ovaries removed. I guess I could also have the conservative surgery and then go on the gnrh medication but I know that's temporary and if I'm going to do that, why not just do the total hysterectomy? Seems like none of the options sound great.

Wondering if anybody can share their surgery experiences and anything they would do differently, any advice on the possibility of multiple surgeries and how recovery went after each, esp the total hysterectomy.

Thank you!

[Jgri]

I’m opposite, c-section 2003 denied endo existed prior. Then after being told I didn’t have endo for another 10 years I saw a specialist and was on the operating table in 3 months (2013 - 34yrs old) for hysterectomy, only ovaries remaining. Major bladder issues, endo, fibroids, precancerous cells on cervix. Currently in recovery for laparoscopic surgery to remove my right ovary and clean up. I haven’t had my follow up so I’m not sure on finer details. I will tell you now though my recovery for both c-section and hysterectomy was way more pleasant than this crap. Not a fan and I won’t be going back again. I’m done.

[Jgri in reply to Jgri]

Not once have I regretted my hysterectomy. I was luckily pain free for 8 years. So worth it. 41 years now and Right ovary just removed. Left not looking great but he left it at my request. If I knew the recovery was this bad I would have told him to take the left too. Honestly I’m so over it I choose menopause. My bladder is my biggest concern for the future.

[ciaotuffy in reply to Jgri]

Has the recovery this time been worse than the first surgery for hysterectomy? Let me know what you think about having left in the ovary, I'm trying decide to leave part of the ovary or just take it all out. The thought of having a 3rd surgery after this one doesn't sound great so I'm thinking taking it all out now would be best but trying to weigh the pros/cons. Thank you for sharing!

[Tracie8796]

I suffered from endometriosis for all through my late 20s and 30s, had 3 surgeries to remove and in the end when I turned 40 I decided it was enough and had complete hysterectomy. I have never looked back and the recovery process was same as my other surgeries, only side effect during the first year I had all the menopausal symptoms and even contemplated hormonal medication but on research and family advice I didn't. This is now my 4th year endo and pain free to which I am forever grateful.

[ciaotuffy in reply to Tracie8796]

Happy to hear that you're doing well and pain free! Were you able to get along ok without the hormone therapy after your total hysterectomy? I'm not able to do hormone treatment so hope the menopause side effects won't be Too bad and won't last Too long. Thank you!

[evilcat99]

Hi, i have been having numberous surgeries to help with endo over the years. Said for years i wanted total hysterectomy but was told ‘oh lets try this, or lets remove this bit first’. Finally they gave in when i was 42. Recovering was possibly the same as previous surgeries. Took longer but i knew it was the end!

Or as I thought would be last. Last year i had to have some endo removed that had escaped the womb.

All in all, best thing ive ever done! hot flushes etc are taken control of with vitamins. Hrt can help with that but im unable to take it as they found endometrial cancer in my womb after removal!

Sometimes you just know the time is up for a problem body part and its a good job i pushed it through

[ciaotuffy in reply to evilcat99]

Glad that you had the hysterectomy and they were able to remove that cancer in hopefully an earlier stage. Happy to hear that you're now doing well! I think logically the total hysterectomy would save me some future heartache of yet another surgery, but then I read about people with bad hysterectomy experiences and it scares me. Thank you for sharing!

[kirstybooth1985]

I had a total hysterectomy including ovaries when I was 30, it was actually my 6 year anniversary on Sunday just gone. I was pain free for around 6 months and ever since I have had no end of problems with pain, bleeding, water works. They don’t know why I’m in pain and still bleeding, it’s so frustrating!!

[ciaotuffy in reply to kirstybooth1985]

That sounds really frustrating and worrisome. I hope they can figure out what's wrong. I assumed that w uterus removed, there would no longer be bleeding?

[Edsmom]

Hello, I had stage 4 endometriosis diagnosed in my mid 30’s. I like you had several surgeries to attempt to remove and alleviate symptoms. I had ablation too which failed after a very short time. I had Zoladex injections to stop my body producing estrogen (effectively menopause) to see if it helped with symptoms. It did but was harsh and I struggled with menopausal symptoms.

Eventually at the age of 41yrs old my consultant agreed to perform a total hysterectomy. I was relieved at last to be rid of hormone treatments that never gave lasting results.

I had my op in October, it took me a good 4-6 months to fully recover from the surgery, it was done laparoscopically too.

I have add back HRT which I’m still taking now. Never had any problems with endometriosis since. Thankfully!

I feel like I lost a good 8 years of my life to this disease. I’m glad to say things are better. Hope you get there too. X

[ciaotuffy in reply to Edsmom]

Thank you for sharing. So how are you finding the side effects of the ovary removal v from the Zoladex injections? That was an option that my dr gave- do lupron or orlissa to block estrogen possibly along with conservative surgery to just remove the cyst but leave ovaries. But that just seems like a "band aid" fix with its own terrible side effects from the drug and then once off the drug since it's only available for a short time, the endo/pain would come raging back. Happy to hear that things are better for you now!