Log in
Endometriosis UK
38,077 members33,280 posts

Open surgery for endo?

Open surgery for endo?

Hi everyone,

Last year I had suspected endo and 2 ovarian cysts that were at least 12cm in size, one on my right ovary and one on my left. I went to a gynaecologist and she told me that they were most likely chocolate cysts but had a small possibility they could have been ovarian cancer. After an MRI scan the doctors had decided that the most likely thing was that they were chocolate cysts and that I had endometriosis. So my gynaecologist told me she would remove the cysts through open surgery where they would have to cut from my belly button down to my bikini line. When I questioned her on why it had to be open surgery (i really didn't want a massive scar) she told me that there were no other options because of the size of the cysts. I went ahead and had the surgery last year. After the surgery she told me that she had sucessfully removed both cysts but had had to take a small amount of my left ovary. She told me that because it was only a small amount my ovary should still be ok. She also told me that she could see that my fallopian tube had been squashed by the cysts on my right side and that I was at a greater risk now of ectopic pregnancy. I was due to get married a few months later so she told me to go away for 6 months and try for a baby and that if we had no luck to come back and see a gynaecologist again. After 6 months had been and gone I knew something wasn't right so went back to my doctors who put me through for an ultrasound where I found out I had another 12cm cyst on my right ovary. I went to see another gynaecologist (a different one from the one who had operated on me the first time) who told me that he (as an endometriosis specialist) had never seen endometriosis and chocolate cysts operated on using open surgery before. He also told me that it doesn't matter what size the cysts are because they can be drained via laparoscopy and that he was now going to have to operate on me again less than a year later than my first op to get rid of all my endometriosis and cyst (I was devastated I had to have more surgery so soon after the first op). After my second surgery the gynaecologist told my husband and mother that the surgeon before had actually taken almost all of my left ovary (A lot more of it than she had made out to us) and that it was unlikely to be releasing eggs. I am now 5 weeks post lap and awaiting my post op consulation in a few days time and I am really nervous about what I will find out. I just wanted to know if anyone else has had open surgery for endo and if anyone has been through anything similar?

P.s i've added some before and after photos of my first surgery. On the left is what ny belly looked like with the huge cysts while laying on my back and on the right is my belly about a week after open surgery.

10 Replies
oldestnewest

I had 2 key hole surgeries to remove a cyst on my left ovary. 1st surgery they just drained it, but it refilled again (found this out during my first ivf cycle 1 year post op.) so had a 2nd key hole surgery to permanently remove cyst by partially removing ovary. So far so good 🤞🏻🤞🏻🤞🏻🤞🏻🍀

1 like
Reply

Thank you for your reply. Glad all is going well for you now! X

Reply

12 cm is very big. She opened you up most likely because she was worried that it could be cancer. Do not worry about the scar, if it is nicely done, nobody will notice it. In your case I would be more worried that cyst came back so quickly. You need to work on you bodies detox and hormonal levels.

[edited to comply with our code of conduct]

If you are young, it is very important to change your lifestyle as much a possible now in order to avoid problems and more operations all your life.

If you worry about infertility, please don't. I personally know a woman who had one ovary taken out when young and she still had many beautiful children afterwards. You can get pregnant with one functioning ovary.

I am not a doctor, but a long time sufferer with interest in health and natural remedies. I read about i a lot, and there is loads of specialists on internet these days. I hope you will find your solutions.

1 like
Reply

PS>. I forgot to mention that it is very important to go to special Endometriosis centers and not to let yourself to be operated by a general surgeon. It is your body - choose best of the best. :)

Reply

Thank you for your advice. I will look into the natural remedies you have suggested. The second surgeon who operated actually told me he thinks the cyst may have been there from before my first surgery but that the first surgeon might of missed it, so that may explain why it seemed to have come back so quickly. I was naive when i saw the first gynaecologist as I had never heard of endometriosis before and she had said she wasn't 100% sure that that is what it was so I assumed that she would have known best. For the second surgery I had confirmation that it was endometriosis so I looked into it a lot more and researched the gynaecologists to find the best one. Thank you for all your advice and I will definitely check out the articles and youtube channels you have suggested.

Reply

Hi Ngaire91, I had open surgery in May, the doc told me I had ovarian and periotoneal cancer. I had a 20cm cyst on my left and 5cm on my right. The left ovary and fallopian tube had to be removed and the omentum. It came back all clear and that it was endometriosis. There was also a fibroid, which wasn't removed and he left the cyst on the right which has been causing me problems. He was going to do a full hysterectomy but decided against it due to my age. I have had regular periods since. I did find it hard to get pregnant for years but then it just happened. I know a lot of people find it hard getting pregnant but it can happen :). I am due back for another scan to check if there is any scar tissue and to check the right ovary. I wish you the very best. I will never get open surgery again if i can help it for all the pain I went through and am still suffering i wish he had just removed everything even though it was something i was dreading but had got my head around it. I actually didn't know i hadn't had a hysterectomy until 3 days after the op?!

2 likes
Reply

Thank you for your reply. I'm glad I'm not the only one who has experienced this. The recovery took me a long time too so I was glad when my second surgery was keyhole. It's great to know that you got pregnant too as this is a concern of mine. I hope all goes well for you with your next scan 🤞

1 like
Reply

Thanks hon, X

Reply

Hey, my first surgery was open - it was to remove an 11cm cyst from my left ovary and a 9cm from my right. Due to the size and the risk that they may be cancerous, I was told it had to be open. Surgery found extensive endo...stage 4 severe. This was 3 yrs ago.

I have been OK for the last 2.5 years, but the pain has since returned and I have been told I will need open surgery again. I am due to see my consultant nxt wk to discuss if/ why this surgery can't be keyhole..... I have been reading up a lot on surgery for treatment of endo and keyhole seems much more common.....I don't know why I am being told I need open again?!

Reply

Hi there, thank you for your reply! Sounds like you have a similar situation to me. My second surgery was keyhole. The keyhole surgery is much more precise than open as with my open surgery they removed the cysts but nothing else but with the keyhole I've recently had he removed two cysts one very large and he removed adhesions from my kidneys bowel and bladder as well as my uterus. I'm still awaiting my post op consultation which is in 2 days so hoping I know more then but if your situation is the same as mine i would have thought they would do keyhole knowing you have endo? But I'm not sure? Hope you get to the bottom of this at your next appointment 🤞 x

Reply

You may also like...