Well, here we are. Had MRI yesterday and the doctor said I had three different kinds of endo—on my ovaries, "profound" endometriosis, and "superficial" endometriosis. I am in France ATM and don't know exactly how this translates to English, maybe they just mean the endo is deep. It was also—yikes—in my rectum which, I don't even know what to say about that. In normal life I don't have any real endo symptoms other than infertility.
She thought I would be able to carry a baby, which is good. Buuuuut ... she did seem to think I would need to get rid of my fallopian tubes, which just makes me sad. She also said my ovaries were absolutely enormous right now, so perhaps OHSS. I certainly have the symptoms of that, but I guess just "mild" one, and it's helped with drinking water.
She did say that if IVF failed even after removing tubes that maybe I would need more extreme surgery. I don't want to risk my frosties!!
I donno. Not at all thrilled. I've had laparoscopic abdominal surgery before for something else and it was actually a pretty big deal with a long time to recovery.
Anyone had their fallopian tubes removed and lived to tell the tale?
I am really sorry that you have had this diagnosis. As someone who was also diss gnoses with extremely bad endo, I understand how you are feeling. You first of all need time to get over the numbness and shock from this disagnosis.
I was disagnosed with stage 4 endometriosis. In the U.K. I believe it goes from stage 1 to stage 5 with 5 being the worst. My doctor told me that it was at the back of my uterus, all over my tubes (they were blocked and swollen) and it was somehow making my organs stick together as my bowel was stuck to something.
Around 5 months after the diagnosis (last year) I had to get both tubes clipped because of water leaking from them which can reduce the IVF success rate from like 50% in my case to 30%. The water gets into the womb and can mess with the embryo.
At first it was just supposed to be one tube but on the day of surgery it was decided that it was going to be them both.
It wasn’t really an easy decision to make as it meant that I could never have children naturally but my doctor said that no matter what my tubes were ruined and they would not work anymore anyways. I had a bit of a breakdown after this operation but, I got better and recovered.
I just had my FET 10 days ago and I am waiting until Thursday to test. I just have to believe that it will be positive.
I also think there is two issues here for people with endo. 1. You have the pains and symptoms that come with having that and needing to manage that regardless of infertility and then 2. There’s the infertility.
How do you feel? Do you have bad period cramps, a lot of pain? For me it is horrendous and my mum also had it as well. I worry about living with this pain forever even after I have children. I think there’s a lot of problems in the NHS about it not being diagnosed and GPS just saying oh you have bad periods and it gets worse.
Even if you get surgery to get some of it removed, it can grow back and you can get scaring and damage from the surgery. My doctor refuses to remove mine. Sorry if this hasn’t helped you. About the tubes, I know it’s hard but if having a baby is your goal, then getting them removed will improve your IVf chances. Speak to other healthcare professionals and your family.
Thanks so much for responding and sharing your own experiences. I'm crossing my fingers for you!! The thing is that I don't have any symptoms of endo other than infertility. I'm not in pain. I don't have bad periods. I usually need to take one paracetamol the day I get it but that's it. So my main concern at this point is the fertility angle.
How did your own surgery go, if I may ask? What was the recovery time like? Thanks so much!!!! xxx
Well that’s a good thing that you don’t have any pain I am really pleased about that.
After my surgery, it was about a week. I felt really stiff and tender around my tummy for a while but it wasn’t that bad. It was day surgery for me and when I woke up from the surgery I was in extreme pain. That was the hard part.
Do you have a doctor here in the U.K. to discuss this with further or are you getting the surgery done in France?
I have endometriosis too. I am unsure of my stage but I did have my last surgery with a BGSE registered endo surgeon two years ago. If took us 5 years & 10 months of TTC to get a diagnosis. We had a chemical pregnancy after my first lap. After my third lap I conceived my nearly 14 month old daughter ( after a long 7 year struggle) We tried again ( mad I know!) & are expecting another baby beginning of April ( very early days) For us there was no other issue apart from where my endo grew ( pouch of Douglas, uteroscaral ligaments & rectum) I was opposite to you I had every symptom of endo you can get 😳 Although it was “only” superficial it caused infertility, pain & unpleasant symptoms. As your endo is proven to be severe you must have surgery with a endo specialist they deal with severe/ complex endo. I wish you good luck & hope having the surgery brings you close towards having your baby you deserve xxx
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Help -Endometriosis, Fallopian tubes removal and IVF? 
It's official
Endometriosis and implantation 
Blocked tubes=endometriosis?! 
Implantation when you have endometriosis 
