Just had lap op and removal of endo, now ... - Endometriosis UK
Just had lap op and removal of endo, now on Zoladex for next six months. Will my endo adhesions return? X
Cant help you with this one but im the same, havnt been told what will happen after the 6 months of zoladex - does it just go back to normal having the pain again? Really dont want to go back to that xx
Hi thanks for your reply, I don't know either where we stand with this new friend of ours - endo ! Time will tell no doubt. Very worrying though, just have to see once injections are over and our bodies go back pre Zoladex. Take care and keep me up to date if your symptoms return. X
Hi there,
I had my lap last year in July. I didn't know i had endo but thought I was having two ovarian cysts removed. After the op they kept me in and told me one of the cysts had been joined to my bowel. Anyway, to cut a long story short, at my follow up appoinment in september they said i had endo, that I had adhesions on my fallopian tubes (sticking it to pelvic wall etc.) and I needed to start Prostap (like zoladex) and Livial. All fine. But I started getting stomach pain. Difficulty going to the loo. Bloating. being sick. etc I was sent away from my gynae, the doctor, A &E... all saying that I had suspected IBS. I was evn referred to a gastro-entorologist who put me on a special diet. Anyway, the pain continued, I was ill more and more often. Being sent home from work etc. I went back to the doctor who sent me for an UPPER abdominal scan, which was unsurprisingly all clear. But during that scan, I broke down, crying,, saying there was definitely something wrong. So, she scanned my ovaries and bang, there it was a 15cm cyst, squashing my bowel, my bladder and everything else. Its so big now, they don;t know what it's joined to. Im going into hospital next week for a full laparotomy, cyst removal and division of adhesions.
Anyway, Im sorry for not really answering your question properly but what i was trying to get across is that even if youre constantly told that your injections mean that your endo shouldnt be growing, if you have ANY inclination that there is a problem,push for something to be done. Im hoping that this massive cyst hasnt damaged my only working fallopian tube beyond repair because had they listened to me, it couldve been sorted sooner. I think the problem we often have is that we end up leaving the appointments trying to believe what the professionals say, when sometimes we need to listen to our hearts.
Im really sorry about ranting on about my own problems. I know many women find that the injections are a real help to them.
Sending you lots of love
Thank you very much got explaining all of that to me. You have been through alot so far and hopefully after this big op you will be pain free and gain a more positive lifestyle again. I also went in to a&e with severe horrible pain, after three days of tests/scans I was told about my two large ovarian cysts. Had lap two months later then told endo was the overall problem. I was relieved op was done but amazed I was given the diagnosis of endo. Total shock followed for a few days as a work colleague has endo and I'm familiar with her pain etc.
Best of luck and thanks very much. X
Thank you! You were lucky to get the tests done through A&E! I think so much is down to how responsive and helpful your doctors are. Let me know how the Zoladex goes as I will be looking for something new after my op now, knowing that Prostap doesnt work for me.
Good luck xx
I was on zoladex for about a year when I was 17. When I came off it my pain and symptoms did come back so I had my second lap. After that I was put on the pill ( again!) since then touch wood I have been fine. I have been on the same pill for about 3 years now and apart from a relatively small amount of pain occasionally ( barely nothing compared to before) and a little bit of breakthrough bleeding I'm fine, I've almost forgotten how horrendous I felt and how bad the pain was before! I also have adenomiosis which I believe was a big factor when it came to my pain but unfortunately there isn't anything that can be done for that but at the moment the pill seems to be doing the trick. So all in all dont give up, there is a light at the end of the tunnel! Good luck x
Many thanks for your reply. Thankfully your pain has totally reduced with thanks from the pill. Hope it stays like that forever. X
I had a lap last September, after going to the Doctors for for years convinced that I had endo. My main problem being bowel movements during my periods, I had many symptoms of endo, that I'd lived with for more than 20 years but i just thought they were normal, but the " toilet" pain was in a different league. I thought I was going to die. When I spoke to my gyne on the day of my lap, I told her I was worried that she might not find it (I had done lots of research and knew endo can be tiny) I made sure she was going to check near my bowel!
When she came to see me after I had come round she explained that she had definitely found it. I had severe endo on my bowel but also on my bladder, ureta, overies, Fallopian tubes and that my left kidney was in danger. I was told that one of my ovarys was stuck to the back of my womb and that the whole package was stuck up with adhesions. She told me that she couldn't remove it all at the lap but she had to refer me to a specialist in Hull she said I'd have to have a team of surgeons as they only do their own areas, she said that I'd need 6 months of zoladex to shrink the endo first. The first injection caused an even worse period which is normal. After that I had no major bleeding or endo type pain for the rest of the 6months. Apart from slight bleeding which was caused by livial I think. I didn't start the livial until I was half way through the treatment. I had got a bit desperate, no sleep every joint in my body was hurting I was in quite a bad way moody etc the livial helped with that. I had my first period last month I was hoping not to have any as I had the mariner coil fitted at the lap. Although the toilet pain wasn't as bad it was still there. Along with the other pains that I've always had. I'm gutted I hated my time on zoladex I feel like an old women I'm now overweight. It now seems like a waste of time and NHS money. I can feel my next period coming, sore boobs and draggy feeling grrrr
I have an appointment with the specialist on the 21st June, just hope he can remove it once and for all. My worry is....... That the waiting list will be so long that I will be back to square one by the time I get my next lap. Sorry I didn't mean to go on and on and on...... Good luck xx
Thanks very much for the info, you have also had a tough time too. It's constant for all of us. Hoping all goes well with your app and they will catch all of the endo. Let me know how it all goes and I do appreciate your reply. X
Adhesions are scar tissue and will always grow when you have a wound, regrdless of what caused that wound. Surgery, Falling off a bike, pregnancy, endo etc.
So yes being on zoladex will not stop adhesions growing on already existing wounds. What it will do, is stop endo from bleeding, and that blood would normally land on other parts of you inside the tummy area and irritate the surfaces of whatever it lands on and that irritation automatically triggers your body to protect itself by creating layer of scar tissue or adhesions.
So having the drug will slow down the rate at which your body is having to grow new adhesions. As soon as the endo is active again after the drug, then the new adhesion growth starts again as it did before the drug.
It should help adhesions for a little while but as with most things, it is only a temporary improvement.
Thanks so much that has come across very clear to me. I have found it very hard to fully understand, no really info from hosp/gp so like others have being doing my own research etc. Thanks again. X
