I need your help…

SOS

So this upcoming Thursday I have an appointment with my gyno/surgeon.  On January 15th, I will have my last Lupron Depot injection, and afterward will have a sit down with my physician to discuss what’s next.  I last met with him four months ago to discuss how I was feeling after my surgery, and what to expect in the future.

At that time, we discussed continuing the Lupron Depot injections for the full six-month course (which I’ve done) and after the completion of the injections, going onto a continuous birth control pill to help control the Endometriosis growth and pain.  He said the choice of B.C. was up to me, and after a lot of research and talking to friends who are nurses and attorneys (who have handled several mass tort cases against certain birth control pills), I’ve decided to try taking Lybrel (generic name Amethyst).  If B.C. doesn’t help with the pain, he ultimately feels a hysterectomy would be the best choice.  After all of the reading and research I’ve done, though, we all know it’s not a guarantee…

But what do I need from you?  I’m working on generating a list of questions to ask him during our appointment.  I know me, I’ll get so flabbergasted by all of the information that I’ll forget 50% of the questions I want to ask. So I plan on printing them out and walking in with a list.

If you can think of any additional questions you think I should ask, please feel free to drop me a comment below! And thank you!!!

Here’s the list of questions I’ve created so far:

  • How long until the Lupron Depot is out of my system? I know the medication is supposed to last one month, but when will the side effects go away?
  • I have about 38 Northindrone pills left (8 in current prescription; 30 for next month).  Shall I continue to take them each day until gone?
  • Will menopause be as bad as it was on Lupron Depot? Or was that magnified due to the chemical inducement?
  • When do I start birth control?
  • How long will I have to be on continuous birth control?
  • I know that women over the age of 35 should not take B.C., or be monitored while taking it. What sort of regular monitoring will we need to do?
  • I’ve heard B.C. can cause cysts and/or even cancer.  Is that true?
  • I understand I will have breakthrough bleeding or spotting while on continuous B.C.  How bad will it be? Predictable?
  • Will Lybrel/Amethyst be bad for me because of my Gilbert’s Syndrome? What about the Endo on my liver?
  • If I don’t like Lybrel/Amethyst, when can we try something else?
  • If I can’t stand B.C. at all, what’s another option?
  • If I do need a hysterectomy, would it be partial, total, or radical? Remind him of my history of abnormal Paps.
  • If I do need a hysterectomy, can we do it without transvaginal mesh?  TVM has ongoing mass torts…
  • If I do need a hysterectomy, will I have to go on Hormone Replacement Therapy?  If so, will the estrogen make the Endo grow back quickly?
  • Assuming my next appointment will just be for my annual pap? Or will we schedule an ultrasound?
  • When will I know if we need a second excision surgery?
  • I’ve changed my diet hoping to help keep symptoms tame.  I’ve also started taking supplements (Omega-3s, Folic Acid, Calcium+Vitamin D, Milk Thistle Seed Extract).  Anything else I can do naturally to help?

I’ll likely overwhelm my doctor with questions, but he has incredible patience, understanding, and has always listened to me.  I adore him and his staff and am looking forward to our meeting.

But again, if you have any suggestions for further questions, please drop a comment below.

Always yours, Lisa.

14 thoughts on “I need your help…

  1. Sorry I haven’t read your whole blog to know your history but if you are still having symptoms, do they think you still have Endo that was missed? If so, maybe a better excision surgeon asap to remove it all? Do they think you have Endo in/on your uterus (rare) to warrant hysterectomy?

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    1. No, I am not presently having any pain and I know some Endo remains on my liver because he said it was too risky to remove it from the surface of the organ. It’s just something we talked about as a possibility in the future if the pain had not gone away.

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  2. Avoid a hysterectomy if you can. the endo comes back. It’s a horrid op and recovery and it doesn’t solve anything. 2 yrs on from mine and I still can’t have HRT due to the endo coming back and still having to have laps and live off morphine and tramadol. The only benefit has been no more periods as I had ridiculously heavy ones. The surgeon I have now says hysterectomies should only be offered if the uterus is damaged. Don’t make my mistake – try any treatment other than that.

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  3. I can tell you that my cycle returned about 7-8 weeks after my last Lupron shot. If you have to resort to a hyst do a full one. The hormones from the remaining ovaries will continue to stimulate any endo that is left behind. I had to wait three months after my hyst to start hormone replacement. I was only 28 at the time so it was necessary if at all possible for me to be on them. And go into it well aware that it will solve the monthly flares in pain due to menses and halt further progression, but if you have any nerve damage the pain from that will not go away with a hyst. You have some tough decisions ahead!

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  4. How did your meeting with your doc go today? Did you get all your questions answered? I tried the continuous BC where I took it for 3 months straight then had a period…repeat. I had tons of breakthrough bleeding that lasted for 2 weeks at a time, plus moderate cramping during that time as well. I didn’t like it. Then every once in a while I would have a terribly painful period. That’s when I decided to go on a normal BC regime, which still didn’t completely make my life better. So if you try that route, don’t be surprised if you have some funky side effects. I tried this for 9 months before deciding to have a TAH and BSO. I’m on PremPro now, which supplies both estrogen and progesterone–the progesterone is to help offset the estrogen in the hopes that the endo doesn’t come back…time will tell if it works well. Unlike you, my pain was concentrated during my periods and when I would have the occasional ovarian cyst rupture, so I’m optimistic that my hysterectomy was sufficient to remove enough endo (and those diseased ovaries) that it doesn’t become a problem for me later on.

    Sending good vibes your way in the hopes that you will soon be living a more pain-free life! Good luck!

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    1. Aw, thank you hun!! Unfortunately, the insurance company & the pharmacy who supplies my Lupron Depot had a “miscommunication” and my appointment for the injection and the sit-down with my Doc was rescheduled until the 19th. But I will let you know the outcome! And thank you for the feedback on BC. I’m glad your hysto has worked well for you! ❤

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  5. Just so you know the definitions of hysterectomy (in case you don’t already know or something reading this blog doesn’t know):

    PARTIAL HYSTERECTOMY (or subtotal hysterectomy) = removing the uterus, but leaving the cervix portion of the uterus. The tubes and ovaries are separate from a hysterectomy itself.

    TOTAL HYSTERECTOMY = the WHOLE uterus (to include cervix) is removed. The ovaries and tubes remain intact. If you get the tubes and ovaries out that’s called a BSO = bilateral salpingo oophorectomy. The word total has nothing to do with tubes & ovaries being removed.

    RADICAL HYSTERECTOMY = is an operation done to treat some cancers of the cervix. The surgeon takes out the uterus and the ligaments (tissue fibers) that hold it in place in the pelvis. The cervix and an inch or two of the deep vagina around the cervix are also removed. A hysterectomy for uterine or ovarian cancer removes less tissue. THE MAIN GYST of RADICAL hysterectomy is cancer. The word radical has nothing to do with tubes and ovaries being removed. However, with a cancer diagnosis it is like to have a BSO with the radical hyst.

    HYST = uterus … not tubes, not ovaries. The cervix IS part of the uterus.

    SALPINGO = tube

    OOPHOR / OOPHORO = ovary

    So many women mistakenly think “total” hysterectomy means your uterus, tubes and ovaries being removed. It doesn’t — total hysterectomy simply means the ENTIRE uterus. It can be confusing!

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