theonusta3 karma2014-03-19 17:24:38 UTC
I would like to say that while hysterectomies are an expensive procedure, they are not drastic unless you are still wanting kids, and they are no more dangerous than any other procedure you may have, including the diagnostic laparoscopy.
Many doctors, and most endo sufferers, wish to be as non-invasive as possible, but in some cases that just isn't enough.
While it is true that hysterectomies dont' cure endo, it's important to know that nothing cures endo. So it's a matter of balancing your quality of life with potential kids and then balancing the treatment and its side effects/risks.
Endo lesions are not scar tissue. While endo lesions can create scar tissue, as in the cases of adhesions, it's not the same thing as surgical scarring. And while surgeries do leave some scarring, only many many repeated surgeries would leave or create scar tissue that would cause pain.
Also, ablation is not the same as excision. Excising the tissue is much better in that it removes the whole lesion rather than simply lasering off the surface. It's like mowing down a weed, while excising is taking it out by the roots. It's an important difference that affects the results you can achieve.
Endo operates on estrogen, so really, as long as your body makes estrogen (specifically the form your ovaries produce) your body has a genetic marker that lets the lesions show up wherever they like. Controlling the disease has as much to do with controlling your estrogen output as it does with removing existing lesions.
Further, you never want to assume that doctors remove tissue during a diagnostic lap. Many don't. It's an important question to ask your doctor if you are pursuing a lap. I'd also ask them about multiple light sources, as they can be invisible until put under different lighting. Many surgeons don't know that either.
All that being said - I recently had a hysterectomy and it has been LIFE CHANGING. My pain is completely gone, and my menopause is managed with a very low dose of HRT. While this does mean I have an elevated risk of recurrence down the line, it also means I'm holding off increased risks of osteoporosis, multiple cancers, and am generally much more comfortable.
There are also things that can lead to a more successful result with a hysterectomy as treatment:
These things meant I had the best chance of success long term. It also meant I could get it done laparsocopically, so no large incisions. Faster healing time and decreased risks of infections and more precise cuts were also achieved through the DaVinci robot assist.
All that to say this - there comes a time when some women will have to choose between quality of life, and keeping organs that are prolonging their pain. That's a personal choice. But you should make that choice with all options on the table and all the most current and relevant information you can gather.
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theonusta2 karma2014-03-19 17:04:35 UTC
Not sure if you two have discussed the use of Danazol? It mimics the hormonal balance of pregnancy. I was on it pain free for 3.5 years! It does have some side-effects but they were manageable by comparison to the symptoms I had.
It's worth asking about for sure. :)
theonusta2 karma2014-03-19 17:01:56 UTC
I have heard of this. It's based on the idea that on a cellular level, our bodies are going to create endo lesions. So even though you may not be able to see a lesion with your eyes, doesn't mean that it isn't already growing on a microscopic level. This is why surgeries, even when all the endo lesions are excised, can still have mixed results. Some of us are "lucky" enough to have really aggressive cases where, on a microscopic level, we still have lesions.
theonusta1 karma2014-03-20 23:39:06 UTC
It should, but if she has specific concerns, she should bring them up. I did some pelvic floor therapy, and it did help a lot after surgery. Best of luck, and I'm hoping you guys find a way to a better solution! :D
theonusta1 karma2014-03-20 02:32:36 UTC
I would caution against assuming that a lack of period means a lack of developing endo lesions. Scarring of the uterus is the result of removing the lesions, not a direct result of the end lesions themselves.
I say this because after my first lap, they started me on a similar thing. No periods for a year, but the pain came back at about 6 months, and worsened after that to the point of being on constant pain killers by about 9 months.
When we got back into surgery, my endo had ballooned and done a good bit of damage to my organs.
A lot of doctors think that no periods means no endo and that's just not the case. You have to deal with the estrogen. With aggressive cases, even a little estrogen can give it a foothold.
Also, if you are worried about scar tissue, there are massage techniques that help your body break it up and process scar tissue. I would recommend finding a good therapeutic massage therapist. They did wonders for me following my second lap. :)
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