Endometriosis - need input on what to do

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Originally Posted by Akatude6 This endometriosis and Adenomyosis is so debilitating. I just want to die! Idk whether to get a hysterectomy and I am about 6years away from menopause. I can't focus, constantly weak,no sleep, worried, stress, you name it. Any feedback if I should or shouldn't? The endo is all over my uterus, rectum,and ovaries.

Honestly, I had my hysterectomy 2 years ago and it was the best decision I could have made. I suffered for years with endometriosis and adenomyosis doing everything I could to avoid a hysterectomy. I feel so much better since I had it.

I went 27 years with undiagnosed endometriosis. I was 48 when it was diagnosed. At first, the dr only removed the affected ovary. He was very hesitant to do a hysterectomy. Finally when I was 49, and I was only getting worse after the ovary removal, he did a total hysterectomy. Best decision I ever made! He finally agreed that we didn't know for sure when I would enter menopause naturally (51 is average, but I've known some to be in their 60's).
However, hysterectomy will not cure endo., something I was not told. And while pain did improve, it never really went away. My nerves were trained to hurt (phantom pain) and residual endo. was not removed because they were in dangerous locations (intestines). So while the pain never really went away, it has improved alot (from 8+ on the pain scale, to most days now is less than 5).
So I would say it is up to you. How much pain can you stand? Will you enter menopause at exactly the age you think you will? (not likely). It could be longer or shorter. I was not given hormones, which is good, because estrogen will feed endo.

Have had insanely painful endometrosis since I was a teen... clinically diagnosed at age 37, and then this summer with a laparoscopy to confirm it. I decided to pursue surgery (I am 2 weeks post-op) for 3 reasons:

1) Endo has impacted my quality of life severely! I was missing out on time with family and friends, work was incredibly difficult to manage, and sleep, pooping, and peeing were insanely difficult. Most of the hormonal treatments either made it worse, or didn't offer enough relief. I chose to investigate excision surgery, hysterectomy, and related surgeries as a next step.

2) I was done with having any more kids. After one miscarriage, I was overjoyed to have a child full-term; by the time I was divorced and remarried, both my 2nd husband and I decided 4 kids was plenty (he had 3 from his first marriage). Hubs then had a vasectomy... So to possibly say goodbye to diseased organs that I didn't need anymore was a relief to think about.

3) There was at least 9 - 10 years until menopause... and I could not justify being miserable for a decade! Even then, menopause doesn't "cure" endo (nothing does, though excision and hysterectomy can relieve the suffering); and whatever damage was done wouldn't just go away either. I was concerned about further problems with bowel and bladder.

I just received the surgical and histo/cyto reports today at the 2-week follow up appointment... Endometriosis destroyed my reproductive organs and were absolutely causing trouble with my bladder and bowels as well. I am 41 now and looking back, really wish doctors had more education on endometriosis; I could have had the robotic surgery done 15 years ago! That could've been 15 years better quality of life and fewer complications! Not only did I have my uterus and cervix removed, but ovaries, tubes, and appendix as well. Endo lesions were removed from my colon and bladder, as well as all over the peritoneum.

Surgical report also says the surgeon caught something called retroperitoneal fibrosis; tissue that was strangling both of my ureters and could have caused kidney damage if not removed and ureters repaired. A quick search tells me that it is a rare autoimmune disorder; the symptoms are like that of endometriosis, so it went unnoticed. If I hadn't have had surgery, this disorder could have gone on to cause further damage. (I will have to ask at the next visit if this condition is likely to reoccur.)

So these are my experiences to consider, for what it's worth. I look forward to healing and having a much better life!

I wish you all the best on your journey, whatever you decide to do!!

As you read thru the advice remember one thing..fear is the central theme we all have dealt with. Fear of more pain, fear of the unknown and what ifs. I suffered for ten years with horrific periods, my life was severely impacted by adenomyosis. I was depressed everyday. I finally acted after a second blood transfusion. I searched for a good gynecologist and with her help and expertise I had a hysterectomy. I was able to keep my ovaries. My life changed drastically for the better about 10 weeks later. Now at 54 I am in menopause, it’s not easy but again my life is so much better without the period and awful pain.

Post surgery analysis showed I had endometriosis and adenomyosis - but much less severe than you describe in extent - and my personal experience was that once the nerve blocks wore off from surgery, I was in less pain than I was from the endo and adeno. Never took narcotics. Age 54. Wish I had pushed to do it earlier.

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Originally Posted by Roosters Post surgery analysis showed I had endometriosis and adenomyosis - but much less severe than you describe in extent - and my personal experience was that once the nerve blocks wore off from surgery, I was in less pain than I was from the endo and adeno. Never took narcotics. Age 54. Wish I had pushed to do it earlier.

Same dang it!! I wish I had advocated for myself when younger and trusted my gyno when I was 51. Waited till 54 and the pain from periods was worse than freaking surgery. It did take until week 8 before I felt like "me" again. Even having some granulation done with silver nitrate and a few little cuff biopsies down at 4 month mark was seriously not that bad (scary for sure and was afraid of pain but nothing really) . Other than some late afternoon bloating at 7 months it's hardly anything

Hello, I’m currently six weeks post op from my hysterectomy and endo surgery.

I had controlled the pain for several years with a mirena IUD and Orilissa 150 mg, previously Visanne worked well for me as potential options if you don’t choose surgery. I was hoping to get to menopause as well without requiring surgery, however I needed to go ahead with it. Although the life of an IUD can be five years, I found mine wore out after about three and the pain would start to come back.

At this point, for me recovery has felt slower than expected, however the burning pain is gone with no endo meds. They removed not only the uterus and tubes, but also appendix and excisions from abdominal wall, bladder and rectum area. I’m very grateful to have had a fantastic surgeon who was willing to understand my specific pain areas and areas of concern. I would suggest finding a surgeon who specializes in endo if you choose to go that route, as there is certainly a skill to advanced endo surgery.

Good luck with your decision, it is never an easy one!

I really wish we could post pics of our battle scars. My radical hysterectomy was done in April this past year and I actually had to circle the scars so someone could see them. Nothing but 3 tiny lines left (there were 5) and honestly only issue is trying to lose the 10 pounds I put on in the 4 months I took it easy and ate way too much junk food (I was like a toddler food wise!). I own a working farm so back to schlepping hay bales, 50pd bags of feed, chasing (and being chased ) by every animal out here. Only differences? I'm not in pain allllllll the time, not anemic, oh!!! And can wear white and plan swimming/kyacking trips without a spreadsheet! Shoulda done this 10 years ago! Fear kept me from doing what multiple dr said should. If you trust your doctors listen to them