Today I have finally been diagnosed with endometriosis after pushing for a gynae referral for 11 years. looking down the feed I can see that lots of you have had similar experiences to myself. I was wondering what other people’s experiences were with being diagnosed and treatment. At the moment I am being told that they can give me injections which will induce temporary menopause or to go onto the coil, both of which I’m not keen on. Any advice would be greatly appreciated. Thanks ☺️
morning! I’m 28 and have had three laparoscopys . My first one was done by a doc who didn’t specialise in endo so that didn’t go very well but my last two were for excision of my endo and afterwards my pain felt a lot better! I’m recovering from my third atm so hopefully will be similar. Between my first and third I had the Mirena coil which did help with how heavy my periods were and perhaps with the pain but it’s difficult to know as I’ve been on some sort of hormonal contraceptive to deal with bad periods since I was 14! Before my third surgery they offered me prostrap injections as a means of keeping things ticking over so to speak before my surgery but the side effects outweighed the pros for me and I felt I could hang on till my surgery. I’ve just had my coil removed as we want to try to conceive once I’m recovered so the surgery will hopefully have helped my chances with that!
I would say it is odd that they haven’t suggested surgery as this is the gold standard for treatment and the other things treat the symptoms not the actual condition. I would say well done on advocating for yourself and pushing for that referral! I found it very difficult, it’s taken me soo long too! I pushed for long time for an MRI which was the only scan my endo was showing up on.
Thanks for sharing your experience. I’ve been diagnosed thought a laparoscopy and had some of my end my endo removed. The gynae had said that they couldn’t remove the cells on other organs in my body. If you’ve had three surgeries has this all been to treat your endo?
yes! The first one was more diagnostic and then my second in dec 2021 and third last week were for excision. Mine unfortunately grew back pretty quickly which was a shame but the surgery was still useful so I’m hoping this surgery alleviates my symptoms in similar way! I wonder why your gynae couldn’t remove the other bits. Sometimes they need a specialist surgeon in another area such as a bowel surgeon to help with the surgery or consult beforehand ☺️
I think you’re right, I don’t think she wanted to operate on the other organs herself! How are you recovering from your surgery? I had mine two days ago and feeling pretty sore
hi I no this is random but was your surgeon a endo specialist or just a general gyne surgeon I’m so worried because my surgeon ain’t a endo specialist I’m worried he misses it
hi, mine was a general gynae.
mine was a week ago and I feel pretty sore too! Every day it gets better and I’m more mobile now but I remember the temptation to do more too quickly from last time and that made it worse so I’m really going to take it slowly this time. What I struggled with the most last time was fatigue. I would get so tired after driving / popping out to the shops and would just have to come home and sleep. Take it easy and look after yourself. Everyone is different with their recovery. After my first it took me just over two weeks whereas last time it was 4 weeks with a phased return to work
I get what you’re saying with the fatigue. Never slept so much in my life. I’ve got a two week sick note, so going to take full advantage of that