Log in
Adenomyosis Advice Association
308 members52 posts

New here!

Hey! My name is Ashley- I have Endometriosis and had Adenomyosis (Hysterectomy!). I have had one long, tough ride to diagnosis, around 13 years from the onset of symptoms to be exact! I have an interstim implant in my back running through my spine for urinary retention due to a pre sacral neurectomy. I had a total Hysterectomy (uterus, cervix, and tubes) July 14, 2017. I had to work surgeries prior to that decision as well as did six months of lupron. I am 29 years old and finally have a joy for life again due to my Hysterectomy! 🎗️

3 Replies
oldestnewest

Hi there. I too am new to this group. I found it during the night since I wasn't sleeping from the pain. I had endometriosis & had laparoscopy to remove all of it. I then took a series of shots that put me through premenopause, but it was suppose to be to keep the endo from coming back. Unfourtanely it came back. After trying many things we finally agreed upon a hysterectomy. Seemed like the best answer, & I thought the final answer. They removed my uterus & cervix but was able to clean my ovaries up & I kept both of them(this was in 06). Well I started having a lot of abdominal& pelvic pain but I brushed it off & took Aleve & just dealt with it. In August of this year I had the most extreme pain in my lower abdomen. It was so bad, I went to the ER.. They couldn't really find anything wrong. They did an ultrasound & said they could not find my ovaries. Even to the point of thinking I was mistaken & they actually did take my ovaries. I decided to make an appt with my gyno. After a couple of appts & test we decided to do another laparoscopy to see what was going on. So yesterday morning I went into surgery. The endo in fact was there & had taken over both of my ovaries. Therefore they removed both & my tubes as well. As soon as I woke up I asked the nurse if we kept my ovaries. Sadly they are gone. Now I'm dealing with the pain & also the stress of what next. This has been a rollercoaster ride for sure. Good luck to you in your life & whatever the future holds for you. I'm so glad you have joy & your life back. I want to be at that point again.

1 like
Reply

That's so much for you to deal with. I'm really sorry you did not have much time to mentally deal with the loss of your ovaries. Ate you on HRT now? I'm due for a total Hyst on Tuesday, Oophorectomy and I decided to lose my ovaries for the exact reason here you described.

It seems like if you have endo, it will attach and spawn to what's left in there.

I am going to ask for patch HRT as recommended by another user on here.

I hope you are coping well and getting some benefits of a pain free life soon.

Good luck

Kathryn.

Reply

Welcome,

Yours was a tough path but a greatly encouraging story. I hope you will share your improvements on your quality of life post hysterecromy. I am due mine on Tuesday and I have Adenomyosis and have had endometriosis (with my suspicion they will find it too on Tuesday)

Thank you.

Kathryn.

Reply

You may also like...