hope you can help me finding some more info with sharing your experience.
Long story short, I’ve been diagnosed with endo two years ago, when I had a laparoscopy and they found endometriosis on my left ovaries (they found it damaged), on my colon and on my uterus. They put me the coil as treatment for the endo and my gynaecologist said the period would stop along with pain. After months, the period didn’t stop and back in august I had to go home from work as I had period pain. I went back to the same gynaecologist and explained the situation, and he told me to take the pill again along with Mirena coil, and he put me on a waiting list for a second laparoscopy. The pill did work for three months, and then in December I had pain again, blood and even bladder infection. January, my pain was so bad I was crying in the car. At this point the gynaecologist suggested to increase the dosage of the pill. It took again few months to work, but for the past two months I’ve been fine!
In a week I have a laparoscopy and I’m anxious and nervous, as I’ve been good for the past months and I don’t want to go through surgery if not needed. I am not sure if my endo is back or if I was just anxious when my pain came back as I’ve been in pain for more than half of my life.
Can someone help me with sharing their own experience? Do you think I’m doing the right thing going through a surgery again? How are the chances the endo is back within a year?
I’ve also read that the coil and the pill can help with managing the symptoms: what if my endo is back but I can’t “feel” it as the pill and the coil help me with the pain (if that make sense)?
Thank you to these who will reply ❤️
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Raja23
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Hi I had my first lap in 2023 where a lot of my bowel ovaries were stuck together I also had endemetriomas which he drained but said I wud need further surgery fast forward this year I had further surgery where I unfortunately had to have my tubes removed endemetriomas redrained same surgeon in this time but had to have bowel surgeon on stby. So he said to me in a year It had progressed quite a lot in that time so they manged to free up my ovaries bowel etc I have been given a zoladex treatment for the last 3 months which has helped with no periods etc. the thing is it does grow back so yea Iv manged to keep flare ups at bay with the zoladex and change of diet and since my first lap my symptoms have been a lot better might be worth a mention of the zoladex it slows everything down good luck x
you’re doing the right thing imo. At worst you can tell them if it isn’t desperate then don’t remove any unless it’s an absolutely necessity :/ it’s a god idea for them to know the extent and progression of it at the least though. :/
I didn’t even think you can tell them not to remove any. I thought you do the surgery and then they decide what to do. But thanks for sharing your experience: it is helpful for me to gather more info around
I can completely empathise with the worry about whether or not surgery is the right decision. Have you had your pre op appointment? If not maybe you could discuss this there?
My understanding is that the coil and the pill aren’t in any way pain killers, they are supposed to reduce its capacity to progress because they reduce oestrogen which fuels it. There are also medications you can take like deinogest which actually repress it through different mechanisms. Therefore, I don’t think they would have the capacity to create a situation where it’s progressed but you can’t feel it, as you described. You can however have no symptoms with later stages of endo so it’s not impossible that it’s progressed and you have no symptoms.
I also think your symptoms can be a helpful guide re whether to have surgery or not because surgery is about symptom management. I was told by two consultants that the only reason to have surgery was to manage symptoms as you cannot eradicate endo because it grows back and yes I believe it can grow back as quickly as you say.
Is there other evidence to justify the second surgery? Have you had scans for example? Getting a specialist scan really helped me to make my mind up.
Also is it possible that your pain post surgery was your body adapting to the pill or coil or recovering from surgery?
It is so tough and there are always so many unanswered questions which is unbearable but when I was in your situation I just gathered as much info as possible and then went with what looked like the right decision for now.
Don’t be afraid to change your mind re the surgery for now though. It needs to be the right decision for you based on your symptoms and the information you have available to you.
Thanks for sharing your experience. I didn’t even think that my body needed time to adjust to the coil and the pill; see, my gynaecologist told me at that time that the coil would have stopped my period and my pain, and that it would take between 3/5 months to adjust. Hence why I was concerned when after almost a year I still had period and pain (I was bleeding for 4 days, not as heavy as the normal period, but still, with cramps too). I’ve been in this condition since I was 13, maybe that’s why I panicked a bit when after a year from the surgery a still got pain and cramps.
When I went to him the second time, explained him what was happening, he put me straight away on a waiting list, saying that it takes a year anyway and that if I got better I could have cancelled the surgery. The thing is I wasn’t better till past august, when after almost two years my period stopped and even the cramps. I still feel uncomfortable sometimes as I have problem with my belly, gas in my intestines or stomach, a burning sensation where the uterus is (kind of endo symptoms), that why I was happy to go through a second surgery. I am just anxious now as my condition is not as bad as the first time, but I still feel something.
Not to mention that the surgery was on my left ovaries and they never touched the right one, and when I was in pain during my period that’s where most of the pain was…
I feel like now is a bit too late to say no to the surgery: it is next Monday I will keep you update it to share this experience too.
Thank you so much for your reply: it really did help me gathering more info!
It’s just so hard to know what to do isn’t it. I find my symptoms change all the time and are definitely influenced by stress, nutrition, life style etc too.
Really hope the surgery helps and it would be great to hear about it for sure if you’re happy to share,
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Back and hip pain with endo 
pill or Coil for endometriosis 
Mirena coil, don't be afraid of trying it.
Is the coil known to be more effective than the pill? 
I’m so fed up :( 
