I was diagnosed with Endo at age 20. I also have PCOS, adenomyosis and pre-cancerous uterus cells. I’ve had around 11 surgeries since I was diagnosed and have tried every treatment, pill and herbal remedy available. The first specialist I saw at first denied I could ever have Endo because I was “only 20”. After being admitted to emergency twice because of the pain he finally agreed to exploratory surgery and low and behold it was Endo, classified as severe.
I only have one ovary due to PCOS. After it was removed my specialist recommended that I do IVF after harvesting my remaining eggs and then have a hysterectomy to manage the Endo and other things. I went along with this, trusting him.
I found out all about IVF and how an unfertilized, frozen egg only has a 20% chance of success on thawing compared with fertilized eggs. My specialist recommended that I consider getting donor sperm to fertilize my eggs and freeze the embryo if I wanted a better chance of success later on. At 24, I wasn’t really comfortable with doing this and the whole thing didn’t sit well with me. But I booked in to harvest and freeze my eggs and I also booked in for the full hysterectomy (which would have put me into early menopause). I was due to start the process in 10 days. Then, just on a whim, I decided to go and meet with another specialist.
She almost fell over when I showed her all my results and explained the treatment I had been recommended. Apparently it was all totally unnecessary based on my results and egg count. She told me that my other specialist “had a reputation for recommending unnecessary surgery “. (Who knows why? Perhaps he gets a cut from the IVF clinic?). This naturally totally shocked me. I decided to get a third opinion from another specialist – who said the same thing.
Unnecessary surgery! I nearly put my body through the stress (not to mention the cost) of harvesting my eggs and then having MY ENTIRE UTERUS AND LAST OVARY REMOVED and I’m only 24!!!!!!
I’m now holding somewhat steady with a treatment of The Pill and two Mirena IUD’s inserted.
I’ve always put so much trust in doctors and specialists and I just want people to know that sometimes they get it wrong. There are some absolutely amazing specialists out there, like my current one, and then there are some truly shit ones too. I want everyone on EndoActive to know how important a second opinion is when it comes to their health and potentially having a hysterectomy.