so..

Yeah – S wants me to move the surgery up. OK. Fine. Whatever.

So I call K – the lady who schedules the surgeries. OK? She calls me back this afternoon and says that she can’t reschedule me until I’ve talked to Dr. K on the 15th and find out what she decides to do. I’m getting so discouraged. I’m thinking – great, here I am planning everything, getting sitters lined up, putting my ducks in rows, etc, and what Dr. K gonna say, no? And why is it my age? Dr K had no problem with my age in March! It has to be these new medical conditions I’ve aquired over the summer. Can we say bigger surgical risk? Oh, goody! Then tell me what to do so I can have the surgery. Lose 30 pounds? Man, I’ll be exercising 3 hours a day! Unfortunatly there’s nothing I can do to drop the meds, though. The conditions I have are chronic. At least not the Trigeminal neuralgia – or at least that I know of. But I’ll jump through whatever hoops I have to. Why? Because right now I’m hopped up on vicodin, crying my eyes out in pain. This is utterly terrible. And hey, I’ll meet her half way. I’m willing. If she says “look, I’m willing to go in, take your left ovary and tube and burn all the endo I see but leave the uterus as long as it’s ok.” I’ll say fine. It’s not like I’m jumping around enthusiastic about menopause, ok. It will buy me some time – maybe 6 years or so like my mom.

But I’ll have to tell her what happened to my mom, and why that does worry me.

They took everything but one ovary out so my mom wouldn’t go through menopause. They thought they got all the endo, too. Then 6 years later my mom nearly died on the operating table because her other ovary had become necrotic. When they opened her up the surgeon said she literally filled with endo. All over her bowel and bladder and cul de sac. It took 2 surgeries to excise it all! They removed the dead ovary and saved my moms life. She says she wishes now she would’ve just chose menopause. When I asked what I should do – she said have them both removed.

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One response to “so..

  1. Endochick,

    I read through some of your recent posts and felt compelled to write to you.

    I feel very badly for everything you are going through!!!!! I am so sorry for your pain!!!!!

    Goodness knows that I have had my share of ER trips over the years! I have passed out from the pain on multiple occasions. I have had severe hemorrhaging that resulted in anemia. I have had pain that truly prevented me from functioning!!

    Only you know your body and only *you* can make the decision on how to proceed.

    I certainly do *NOT* want to add to your stress in any way but want to make sure you know your options. Most Traditional Western Medicine doctors don’t present anywhere near all of the endo treatment options that are available! I hope you won’t be offended in any way by my comments and I know hysterectomies are an emotionally charged issue. My only intention is to be helpful!!!

    In light of your complicated family history, I’m wondering if you have tried all available options other than hysterectomy. I know this may not be what you want to hear since it sounds like you have all but made your decision to have a hysterectomy. Again, only you can make that decision! It’s your body!

    I just want to make sure you are aware that there are many women who do go on to have endometriosis-related problems or endo-correlated illnesses *after* having a hysterectomy. Several of my local support group members have gone on to have *severe* pain post-hysterectomy… regardless of whether an ovary was left intact or not. I am NOT telling you this to be upsetting in any way!

    I just want to make sure you know – going in – that it can happen. I know women personally who regret having had a hysterectomy and are much sicker post-hyst. This certainly doesn’t happen to all women who have a hysterectomy but it can happen. I know women who wish someone had told them this *before* their hysterectomies.

    I just wanted to make sure that you know that hysterectomy is not a cure for endometriosis; there is no cure at this time. You are probably well aware of this and I truly understand how the pain can be incapacitating and result in desperately wanting a hysterectomy. I have had my own moments of contemplating the possibility of a hysterectomy, as my mother did at a relatively young age. In my case, I have decided it’s not the right option for me… at least not anytime soon. That does NOT mean it isn’t the right choice for you.

    I can say that I wish I had tried homeopathy much sooner! I have found homeopathy incredibly effective at both helping my acute pain and helping my bleeding problems. Everyone is different so it would be difficult for me to say which homeopathic remedy (or remedies) would be appropriate for you. If you are having violent pain, sudden pain, or stabbing pain… I may be able to give you a suggestion of something to try.

    A homeopath or naturopathic doctor would be best to advise you on homeopathic options. Women in my local support group absolutely swear by other alternative modalities like Chi Nei Tsang, castor oil packs, or Maya Abdominal Massage.

    Many women in my support group have had GREAT results with specialized physical therapy for pelvic pain which includes internal myofascial work/tissue manipulation.

    There are so many possibilities for treating endo that most gynecologists don’t discuss or even know about! Those who know about them often scoff at them/don’t believe in them.

    I have met women who HAVE gotten results from various alternative treatments and I have gotten results myself from various alternative treatments as well.

    I know the pain is scary! I know it intrudes on your life. I know you are desperate for relief. Your posts are just oozing with the physical and emotional pain you are experiencing!!

    Obviously hysterectomy is a permanent thing. Once organs are removed (whether it be ovary/ovaries, fallopian tubes, uterus, cervix, or whatever)… they won’t ever come back.

    Another thing to be aware of is that there is controversy about vaginal vs. abdominal hysterectomy methods. Some doctors believe that vaginal hysterectomies increase the odds of “spreading” endometrial tissue… thus causing problems post-hysterectomy. The recovery time may be quicker with a vaginal hyst but in the long run the chances of endo-related problems may be much greater! Also, pulling the uterus through the vagina can cause pelvic floor dysfunction and other problems post-hyst.

    Also, having all endometrial implants removed at the time of surgery *BEFORE* any organs are removed is very important to prevent “spreading” the endometrial tissues. The order matters. It’s important to ask your surgeon lots of questions about such details before having a hyst. Not all surgeons observe this order and some don’t even bother removing implants before organs!

    Also, there are definite disagreements among surgeons on “burning”/cauterization vs. excising/cutting lesions out. It is my understanding that most surgeons now believe excision is the most effective way to remove the misplaced endometrial tissue. It’s important to know and agree with your surgeon’s philosophy and determine whether it is aligned with current practice amongst the most experienced, skilled endo surgeons.

    Also, if you do have endo-related problems post-hysterectomy… drugs like Lupron will have an increased risk of causing osteoporosis since you’ll have the “surgical menopause” risk factors and the Lupron-induced risk factors for osteoporosis.

    In addition, women who have “surgical menopause” have been shown to go through menopausal symptoms again when they would have naturally had menopause. Yes, that means going through menopause twice! While some women may experience this and not make the connection that this is what’s happening (since many years may go by between the two and they think it’s behind them, attributing symptoms to some other cause), there are studies that show it does happen. Obviously every woman’s experiences with menopausal symptoms vary and there is no way to predict how it will affect a particular woman.

    It may sound like I am trying to persuade you to make a different decision than to have a hysterectomy but that is NOT my intent! My intention is to make sure you have weighed all the options before proceeding with any decision… one way or another.

    I have seen women in my local support group struggle with this difficult decision. One woman scheduled and cancelled her hysterectomy 3 times only to decide not to have one.

    Again, only you can decide what’s best for you. If you have questions or need information, there are organizations that can help you evaluate your options. Here is one such organization:

    http://www.hersfoundation.com/

    With your family history of your mom and grandmother having complications following a hysterectomy, you may want to do further investigation before you make a decision that will have permanent results. I have had the misfortune of talking with several women who have had hysterectomies and then gone on to have more pain, more problems, and additional (endometriosis-related) illnesses. I have also talked with women who felt better after hysterectomies, at least initially. (Some women feel better for a year or so and then go on to develop endometriosis-correlated illnesses like fibromyalgia or bladder problems like incontinence).

    Obviously I am not saying this will happen to you if you get a hysterectomy! I just want to make sure you know some of the potential risks and benefits. If you don’t have a local support group available… you may have family members’ experiences, the Internet, and your doctor’s take on things alone. By talking with many women about the benefits vs. risks of hysterectomy, you may learn more. I know it’s a complex matter.

    Another thing to consider is that endometriosis patients tend to have more allergies and sensitivities than the average person. I have known of women who couldn’t tolerate the hormone replacement therapy medications they took post-hysterectomy. If, in fact, you and your doctor plan to do HRT after surgery… you should be prepared for this as a possibility. (A waiting period before starting HRT after a hyst for endo is also recommended)! Obviously I’m not saying such HRT-intolerance is inevitable. I’m just making sure you know it does happen to some endo patients.

    I hope I NOT adding to your stress in any way! That is not my intent at all! I just want to make sure you are making an informed decision because once you have a hysterectomy, you won’t be able to undo it.

    I wish you the very best of luck and I truly hope you get the relief you need and deserve SOMEHOW as quickly as possible!!! I have talked with many, many women about this difficult decision and I know it is not easy!

    My thoughts are with you and your family at this difficult time. I am sending positive energy your way!!!

    Jeanne

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