Ovary and Fallopian Tube removal advice

Posted , 3 users are following.

Hi All,

I am new to this group. I just found this forum this evening. I cannot sleep because my mind is racing. I would appreciate some advice.

I am 42 years old with a history of endometriosis (diagonosed 6 yrs ago). In that time I have had two surgeries to remove bilateral endometriomas each time Following the first surgery I was prescribed depro injections for a year and then advised to use the mirena iud. The second surgery followed in two years. This past September (two years later) I landed in thw ER with my first rupture which was incredibly painful. While there imaging was done and revealed an 11 cm endometrioma (confirmed via MRI) on my opposite ovary as well as two others on that ovary that had a rupture. I'm experiencing a significant amount of pain.

I am scheduled to have both ovaries and tubes removed in less than two weeks and I'm terrified. Doc feels that I have too much scar tissue to save an ovary and that we'd just be going back in even if she tried. Can anyone tell me what to expect following surgery based on experience? Thanks. I appreciate any support.

Gratefully,

Pauline

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  • Posted

    Hi Paulinep

    You've done great to make it this far. Your post doesn't make it clear: do you still have your uterus & cervix? If you do, why the won't doctor take those at the same time? Because just as with needing another surgery if he left ovaries in, you might be needing future surgery to remove U & C.

    As to what to expect: after the surgery it will take a while for your body to settle. I needed 6 months for my body to adjust to synthetic hormones, but I was 27. You and your doctor should have a long conversation about hormones. I used conjugated hormones for 27 years, tapering down over the last 5-7 years. Conjugated hormones have been said to be safer than the combined ones, but I haven't paid attention to research in several years. Each woman's risk depends on her medical history so, again, talk to your doc.

    Many of us experience pain for a while after surgery. Nowadays I'd try acupuncture for that pain. To me, it seemed as if my body had phantom pain for all the lost organs. That's just how it seemed to me.

    People are going to jump in and tell you that endo can come back after hysterectomy. It can. I had all diseased organs removed at a young age - except they just scraped the areas on my intestine. It took 27 years for endo to come back, and it came back on my colon. But I had 27 fabulous years without endo, plus 8 more years since it returned & they removed a section of my colon.

    In my experience, removal is better than scraping (or cautery, they may have done some of that). But that's just IMHO.

    I hope you've got a great endo doc & that all goes well.

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    • Posted

      Thank you for the reply! Yes, I still have my U and C. My doc said that they appear to be adhesion/endo free so she believes we should leave them rather than do more extensive surgery and create an increase recovery time (2 weeks vs 6 weeks). She did ask my preference, but I was largely influenced by her opinion as I trust her.

      My first surgery was done by my now retired doc, he told me he was "shocked" at the extent of my adhesions and spent over an hour just cutting them which was unexpected. The second surgery was done by my current doc. She was visibly shocked by the fact that it had returned and had grown to its current size given she knows how thoroughly she cut the adhesions.

      I just feel like if this is what 42 feels like I don't know how the heck

      I'll function at 62. I'm tired and sick of the pain which is now radiating down my leg. What can I expect in terms of energy after surgery? Will it get better??? And what about weight gain? Did you notice an increase?

      While I'm sorry to hear that you had such severe endo at a young age,I am happy to hear that you've done so well post surgery. I hope you continue to live endo free!!!

      Many thanks!

      Pauline

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    • Posted

      Hi Pauline

      With all due respect and, again, IMHO, I think your doctor is wrong. Has your doctor talked to you about uteran & cervical cancer in endo women? That's a huge part of why I'm alive because by the time we went in to do the hysterectomy, spots were at the last step before cancer - and that happened in 6 weeks from when the laparoscopy was done & we went in for the total hysterectomy.

      Has your doctor mentioned the possibility of her going in & finding things so much worse that she had to close up, bring you up from anesthesia to tell you you have to recover and then have a total hysterectomy? Some smaller surgeries can be converted to a larger surgery on the spot but I have no idea about your surgery.

      I mean this in the kindest possible way: Your doctor is not an endo specialist, who wouldn't have been surprised either by any extent of adhesions or that the endo came back If you can't see an endo specialist soon enough, get a second opinion from a doc with tons of hysterectomy experience. Make sure to get all these docs talking about the probability of having to go back in to get the U & C. You f they say that would never be necessary, get up and walk out. Anyone who says.that knows zilch about endo.

      As to weight.gain: I've struggled most of my life with an extra 10 - 15 lbs. In my 40s that got worse but not due to the hormones. Quitting smoking twice (7 yrs free now) added more lbs. So now I'm back down in the range of 20lbs over, and losing.

      It is very easy to become a bit depressed after any surgery - some docs say it's almost automatic. Depression can lead to weight gain. But if you're healthy & already in the habit of exercise, it shouldn't be a problem.

      We must ask ourselves if we'd like to be think & in agony , because that's the crux.

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    • Posted

      Sorry this wouldn't post earlier.

      Yes, with both prior surgeries we went in with the understanding that if the ovary couldn't be saved I granted permission for an oophorectomy.

      Because of unknown family history (I was adopted), I've been tested for both BRCA I and II, both were negative. After the recent rupture, I had an MRI done to confirm the growth was consistent with an Endometrioma. Additionally, my doc ordered the ROMA blood test done to assess my risk for ovarian cancer. It was well below the range of concern.

      As for weight gain it truly is secondary to my concern for pain relief. I am active, but I feel like this bloat I'm experiencing is related to the endometrioma and I cannot shake it which in and of itself is depressing. I guess I just wanted to know what life without my ovaries will be like. I've read nightmares including the risk for mortality is greater for women who have their ovaries removed before age 45, and ovary removal leads to increased incidences of dementia and Parkinson's in later life.

      Trust me I'm living for today, but I guess I just want to hear the reality of it and not statistics. I fully understand that tomorrow is not a guarantee, but rather a gift ; )

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