Just over two months ago I had my diagnostic laparoscopy and although I knew that it wouldn’t fix all my problems, I thought it would at least ease the pain.
I am in about the same amount of pain as I was before the op and haven’t got a clue with what will happen next.
There’s still some endo in there attached to my bowel, which they couldn’t operate on in key hole surgery so I’d possibly have to have another operation to look at that… However, I have spoken to a lady who has had 3 operations for endometriosis with the chance that there is still some to grow back and may have to do this again?
I’m 26, whilst I don’t want a hysterectomy, I also don’t want to have to keep going back to the hospital to get a bit more of the horrid stuff out (surely they won’t want to keep doing it?)
The impact on my mental health is quite frightening right now and I just don’t know where to turn.
Any advice on next steps would be great. X
Written by
Lunaloo123
To view profiles and participate in discussions please or .
Hey I feel you I’m in the similar position I’m only over two weeks so this is my main worry too as I’m like will it come back? As they found endo on my right fallopian tube but wasn’t removed as it could cause an ectopic pregnancy.
I have a follow up appointment on the 19th December so going to hopefully ask the questions and what my next stage is for management.
After your op did they offer anything for you in terms of management or left in the dark with it all?
I’m sorry you’re going through it. It’s really difficult and I hope you’re coping okay. I’m glad that you have a follow up appointment and I hope that your surgeon helps you!
Left in the dark. Everyone was helpful at the time of the operation and I couldn’t be more grateful. But no one said what to do if the pain continued and just that I’d have a follow up in six months.
Best wishes and I hope we get the answers we need x
I’m getting there still struggling with feeling tired which I don’t get at all.
I hope you’re doing okay today too and feeling a little brighter.
They don’t really give you much after care once you’re discharged. I was just told painkillers and a sick note. This forum had been so helpful with everything too and a great support when you feel like you’re alone with it all.
Hey, so sorry to hear what you’re going through. I had my lap three years ago and they removed all the endo, but I still had chronic pain every day after that. They did an MRI and told me some women just get chronic pain with no explanation.
Are you on the coil or the pill or anything to manage your periods? You need to be on something especially if they didn’t remove all the tissue. You need to push your GP as well for some pain relief, naproxen worked well for me but it works best when taken for a few days leading up to your period so by the time it starts the inflammation is much calmer and the pain is easier. Very hard to do with an unpredictable cycle. I had to ask for it, nobody offered pain relief. ‘Just take paracetamol and ibuprofen’ Blah blah!!!
I am now on the coil and the pill as coil alone doesn’t stop you ovulating and the GP told me that’s when you produce endometrial tissue. Only three days into the pill so not sure if it will work but fingers crossed.
This forum is amazing for support so reach out when you are struggling with your mental health because people without chronic conditions often can’t understand. There are so many women who do get it so you’re never on your own even when it feels like it. Endo can bring you so low sometimes. People often don’t understand that it’s not curable so can get empathy fatigue or act surprised when it keeps happening. When discussing it with friends (unless people ask) I try to keep it short and sweet and not over explain. ‘I’m not going to be able to make it because I’m having an endo flare up and am in a lot of pain. Can we rearrange?’ Cant argue with that!! Try not to overcommit to social stuff and leave time in your calendar to rest after you do things that will take it out of you. Your friends will get used to it after a while so it gets a lot easier. Wishing you all the best. We are in this together!! Just keep reaching out when ever you are low, don’t suffer alone. Xxx
I hope that the combo of pill and coil help you. The whole pain even without endo is quite alarming to me… didn’t know that about the coil though so will speak to GP!
I have codeine but the trouble is I don’t want to use it all the time… this last couple of weeks I have had to take a couple each night.
I can’t sleep very well, pain and just general life is getting a bit overwhelming.
I am so grateful to this forum, it shows that we have each other and you’re right, people not going through this are supportive but you can tell they wish it would be better so it didn’t have to be discussed anymore.
I hope all goes well for you and thank you for coming back to me. It’s just all a little much right now xxx
It can feel really scary and helpless but there are lots of things you can do to reduce the chances of it growing back. The book heal endo helped me to feel much more in control as it speaks about lifestyle and nutrition choices you can make.
You can also request to try deinogest which is another hormone medication, not a contraceptive, that is supposed to repress the condition.
Is it possible for you to write a list of questions and take them to your consultant? I found this really helpful when I was feeling overwhelmed. Are you under an endo specialist centre now do you know?
The lady that had 3 operations mentioned deinogest to me the other day so I might ask about that one. The GP is currently asking the consultant if I would be able to go back on Zoladex whilst they decide when they want to speak to me again.
Yeah, I feel like I am constantly making lists and writing things down to speak to a doctor about. Hopefully there will be an end in sight soon.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help please!!
Please Help Me, I'm desperate. 
Please help me!!
What Is Happening To Me
