So My Dr Is Suggesting A Hysterectomy.. | MyEndometriosisTeam

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So My Dr Is Suggesting A Hysterectomy..
A MyEndometriosisTeam Member asked a question 💭

37 years old, Stage IV endo, left tube and ovary removed last May due to huge endometrioma, persistent pain on that side, not looking to have more kids. Day one and two are typically beyond miserable.

So my dr has recommended a hysterectomy (cervix, uterus) but leaving the right ovary so I wouldn’t go into menopause but wouldn’t have monthly periods. We’ve tried combination pills, progestin only pills, nuvaring, all with little effect.

I know it won’t cure endo but any thoughts on the… read more

posted February 25, 2019 (edited)
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A MyEndometriosisTeam Member

I have two friends with stage 4 endo (one had pain, heavy flow, nausea, etc) the other one had (nausea, weight loss, loss of appetite. They both had hysterectomies (left their ovaries) at 28 and 30. They said they are doing great and got their lives back!

posted February 25, 2019
A MyEndometriosisTeam Member

It really depends on how much pain you are in general! My endo is 365 days a year! The hysterectomy did nothing for me! M ty main concern if it doesn't work! Will your Dr be willing to still treat you after your hysterectomy? Some doctors stop treatment after a hysterectomy! Then your up a creek with no paddle! Everything I have experience is little to do with menopause but actually Endo! My Endo has spread into so many areas my hysterectomy wasn't the answer! It caused so many other issues!

posted February 26, 2019
A MyEndometriosisTeam Member

I have a Stage 4 Endo which had done so much damage to my left ovary. Since, it had to be removed in 2001. When I couldn't take the pain was so bad. I wanted to at least try something to relief the pain. My OB/GYN and Gastro dr said I only had a 50/50 chance. Since, it had spread to all my muscles, joints and my bowel. I had to have a partial colon resection. So, I went ahead with the surgery. All my pain came back the hysterectomy didn't help. I still have it in my muscles and bowel. I also feel it has spread to my abdomen. Every doctor I go to will not help since I don't have my female parts. I have been told my several OB/GYN's that I need a guru who studies endo all the time. Because I need surgery urgently. If you really think it is best for you. Please get a second opinion. Just to make sure. All the side effects from menopause. Plus, the pain all over and no energy and all the other issues that has been caused from the endo. Has effected me tremendously. I still have Chronic Endo, Chronic Pelvic Pain Syndrome, Chronic Pelvic Pain Dysfunction, Interstitial Cystitis, IBS-D, GERD, Ulcerative Colitis, Crohn's and much more. Now, I go to a pain mgmt. doctor so I have to live with a pain pump, pain meds and still have to have cocktail treatments for my Interstitial Cystitis. I also have a stimulator to help with bladder and bowel function.

posted February 25, 2019 (edited)
A MyEndometriosisTeam Member

Congrats on making your decision @A MyEndometriosisTeam Member! I have an appt with a new doc in early May. She is an endo specialist. I am going to wait to make my decision until I meet with her. In the meantime, I have the surgery scheduled for early June just in case.

posted April 15, 2019
A MyEndometriosisTeam Member

@A MyEndometriosisTeam Member I am not having it at this time. My gyn wants me to follow up with my gastro first. He believes I may have endo in my bowels and wants me to have a colonoscopy or similar (like a flexible sigmoidoscopy).

I’m also seeing an endo excision specialist in May and I want to hear his opinion.

My uterus is retroverted, too.. I wonder if I have it behind as well..

posted April 2, 2019

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