Hi, I have yet to be diagnosed but have been told suspected endo. I currently have two cysts one on each ovary. I had a recent mri which came back fine, the consultant told me that I don't need surgery however it's my choice if I want it and I am on the waiting list. I still don't have answers and I am desperate to find out if it is endo. I am again left in limbo land unsure what to do ?
Thanks
I had the same dilemma 2 years ago. The Dr's were all saying they were sure I didn't have it but I knew it was the only way to really know. I think it's about weighing up any risk of surgery with what could be gained from knowing (both knowing that you have it or knowing that you don't). Knowing you don't have it is still useful information.
In the end I did have the lap and they said I didn't have endo. However 2 years in I've now been found to have severe endo throughout my pelvis. So, sometimes it doesn't really matter what you decide! 😂
The one thing I would say is that if you did have it, finding it would be beneficial so that you could find ways to control it so it didn't spread and affect more areas. I'm guessing that 2 years ago mine wasn't that bad and therefore couldn't be seen but in these 2 years it's got really bad so if it had been found back then, perhaps it could've been controlled and I would be in such a bad position now.
Whatever you decide, just trust your instincts and just know that whatever you decide is the right thing for you right now.
X
Thanks so much for your response. I think I will go for it because I just want answers it's been 5 years for me back and to the doctors fingers crossed it gives me more of an idea x
Knowledge is power 💪🏽
Good luck with it.
If it's any help, the procedure itself is really not that bad. I found it easy easier than going to the dentist. No joke! The recovery varies between people but it's not too bad and you'll get loads of support through it all on here.
X
I think weekari's response is a really useful one. I feel that I will be facing this dilemma soon. The last gynae I saw was really useful, suspects Endo but didn't want me to rush into having a lap, he said it could cause issues in itself so wanted to try me on the prostap injection first as a determiner to next steps. Being on it for the first month has helped me clarify that I do have bleeding from my bum on my period (difficult to suss if it was definitely coming from there before). He asked me what I wanted out of investigation and I said to help know what's going on so I can make informed choices. I know from reading on here that a lap, although seen as the gold standard, may not always confirm / deny it accurately (as weekari's post shows) but after years of nigh on being convinced otherwise I DO know my own body and know something isn't right. So I do want to know what's the cause. Therefore when I get my next gynae appt, although I may have doubts like you, I'm going to go for it. I guess it's a balance of weighing up the impact of your symptoms and whether you want to know the cause. Best of luck and keep us posted X
I agree, it's all about balancing it all. And it might not be the right time now but that doesn't mean never.
I also should have added that my endo was found through an mri with orthopaedics due to my back pain. I wasn't even thinking of endo since it had been ruled out but I still got there in the end. Well, hopefully not the end! 😉
Yeah, it's so hard to know when to just stop and think okay maybe they are right and maybe there isn't anything wrong with me. I think best option is to have the op and then I guess I will get a clearer picture x
I bet you are glad in a way you know you have it now as you can learn to deal with it. It's harder having no answers or conclusions.
Definitely better to know. I was literally doing everything to try get better. I was told it was all stress related so I was meditating twice a day, reflexology, therapy, reiki, yoga... You name it! All of that helped me cope but I still felt physically awful. I am just keen to try get some treatment now. I see the consultant in 3 weeks ⌚
Yeah I'm trying to do the same yoga, meditation, keeping positive but I feel physically drained :(. Hopefully all goes well for you x
I’m the exact same as you, I’m currently on the waiting list for a lap. I’m petrified as it’s my first surgery but I need answers to my pain, otherwise we will just be questioning it for years or be in pain constantly etc xx
Exactly, my consultant freaked me out a bit saying there are dangers having the surgery. However I want the answers too. It's my first surgery as well good luck to you and hope you get the answers you want xx
Yeah they have to tell us the risks etc but it’s a very small chance and good luck to you too xx
I am currently on my 3rd day of recovery from my lap.
I was the exact same as you doubting myself with wether I should go through with the lap due to the doctors telling me they probably won’t find anything. Even the gynaecologist in the morning of the lap told me they probably won’t find anything!!
Instead when I woke up they informed me I had bits of endo all over even on my ovaries so I am really glad I pushed ahead with it and didn’t listen to the doctorsxx
That's good you went for it then! It's a hard one and I feel like they are just leaving me without answers and I'm not really sure what's best for me. However I know the way to get my answers will probably be surgery xx thanks for sharing with me
If you don't need to have surgery, don't do it. My Lap caused an incisional hernia. Now I am in constant pain from the hernia in addition to the endo pain. My gynaecologist said that if they try to repair the hernia, I could end up with a colostomy bag. Do not have surgery if you don't need it.
For me I knew it was something that needed to be done. I was super nervous because it was the first surgery I ever had done, but being 5 weeks postop it’s the best choice I made. I no longer have the pain I was in before the surgery, and I’ve been advised to go on the depo injections for a few months to control the remaining endo that couldn’t be removed. It works for some, doesn’t for others. I didn’t know if I had endo either, and I it was only after the surgery I was told I had stage 3 endo. My ovaries, uterus, bowel were all stuck together. I know if I left it it would have got so much worse.
Hi Camille,
I had many of the symptoms for endometriosis, nothing showed on scans. I had unexplained infertility with no answers. I found an excellent doctor who only specializes in endometriosis, had a laparoscopy surgery six weeks ago and it confirmed my endometriosis which was excised from my bladder, bowels, and intestines. I went to many doctors that did not listen to my symptoms, finally had a doctor who listened glad I went with my gut. Feeling great and pain free hoping to conceive soon. Best of luck to you.
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