I'm 47. I was diagnosed with 6cm cysts on both ovaries in May, likely endometriomas. Other than menstrual cramps, I've never had any pain until this year, and even then only two bouts of it. There is no adenymyosis, no bowel or bladder issues.
I saw a specialist yesterday, who didn't push for hysterectomy. But once he examined me and felt around the ovaries, and saw the great discomfort I was in, he said it's likely I have endometriosis and that it could be extensive. I'm getting my first lap soon and it's up to me how far to go in terms of cutting out parts (assuming he finds problems and he probably will).
On the one hand, I'm not dealing with much pain or uterine problems, so I feel like seeing what's going on in there and cleaning up any endo should be enough. On the other, if he finds a mess in there, everything stuck to everything else, I worry that eventually it will get worse and I'll have to have more extensive surgery instead of just taking it all out now.
This is such a big decision and I don't want to make the wrong one. Thank you for any opinions... much appreciated!
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Mori
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I personally don't think there's any reason to remove a uterus unless there is adenomyosis present? A good endo excision specialist will be able to deal with the endo and the ovaries if necessary and leave the uterus. I've just decided to have my uterus removed during my next excision, but only because I have adenomyosis. If it was not healthy or the root cause of much of my pain then I would leave it. It's major surgery and a long recovery.
Thank you, Cookie. I may just ask him to deal with the endo and see if I can manage it. I guess I'm afraid of it getting worse. But then again, if it gets worse, then I'll cross that bridge then.
Hi, I am 42 and just had my fourth lap to excise endometrioma cysts on both ovaries and they found adenomyosis at the same time. In my case, I am trying to avoid a hysterectomy as I am at a high risk of osteoporosis and I am 8 years or more from the menopause. I also would like to try all my other options first as it is a major decision, I am now on the mini-pill but only been on it a few weeks so hopefully that will help. It's up to you but it may be a case of saying what you would like to be done according to what they find. I would research all your options as much as possible and go to a BSGE endometriosis specialist centre and get the endo excised if you are not already going to one.
Thanks, Tulip. We've set it up where we can do what you said, i.e. advise what I want to do according to what they find. I'm in the US, so no BSGE, but I feel confident in the specialist I saw. I guess at this stage, I don't feel comfortable having them remove organs even if they find that the endo is bad.
I hear what you're saying, Shelly, and thanks for the "smartass." I normally detest going to male doctors, but most surgeons are male and I had little choice here. This dude was pretty cool, actually. He's an oncologist and used to probing women's troubled parts, so he knows what stuff "feels" like. And endo is a reasonable guess when I have two large growths like look like endometriomas. I think his "take it all out" was only if he finds florid endo, like parts stuck to other parts and everything a big mess.
But yeah, the rush to surgery seems to be the norm among all of them. I do wonder if the eagerness does stem from financial gain. But I also think money-grubbing is an easy scapegoat for skeptics. When you're trained in traditional medicine, you learn to think in disease model terms -- drug it or cut it out. I'm not a fan of either, but that's traditional medicine.
I decided I'm not letting him take any parts unless he sees signs of real trouble, like cancer.
I've done considerable research on this topic, but the problem is that most of what I've found is on younger women looking to preserve fertility. Even the books I've read on women with severe, debilitating pain who've managed their endo naturally without traditional drugs or surgery haven't gotten to my age yet and had to face increasing probability of cancer or how things have gone for them once they get closer to menopause.
Surgeons do tend to omit the fact that you'll be on hrt for years and that it brings cancer risks and it doesn't always solve endo. A hysterectomy isn't something to rush into and especially till you have established to your own satisfaction not just a doctors say so that non surgical measures aren't viable or there is a safety issue requiring surgical intervention.
I realized I should offer an update to this, for anyone who might be in similar circumstances. I made it clear to my gyn and the surgeon that I wanted to preserve as many parts as possible. My gyn had recommended hysterectomy (given my age). But like Starry said, hysterectomies come with all sorts of problems and to me that seemed like overkill. No uterus problems, no hysterectomy. The surgeon and I set up a "if this, then that" scenario for the surgery (i.e. the worse things looked once he got in there, the more things he could remove). He wanted to remove the left ovary since that cyst was more complex and scarier looking, plus that would allow them the opportunity to send it to pathology to rule out cancer. I resisted that at first, but then agreed once he stressed that he really didn't like the look of that ovary (he's an oncologist so I decided to trust him on that). Plus, the other ovary can take over the job.
I got the surgery. They took the left ovary. No cancer. They removed the right cyst and cleaned up the endo. I had Stage 4 endo and never knew it until that year. The left ovary was stuck to the other organs. I had endo scattered about, even a little on the liver.
After, I had one skipped period and then they've been regular since (well, as regular as they get at my age, but still regular).
It's been a year and only one bout of pain, and it was during a time of significant stress. I've been taking progesterone cream (I've been on that for years). I took indole-3-carbonyl but that stuff made me depressed and headachy. I've been taking serrapeptase and my usual vitamin E and magnesium. I eat a good diet and avoid too many inflammatory foods. Gluten doesn't bother me, but sugar will cause me to have pain down there.
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