Today, let's hear from THIS LADY on what she has to say personally and professionally. I would describe her as an icon of Endo awareness!
Pardon some typos, as this was copied (with permission) straight from a Facebook posting.
Pardon some typos, as this was copied (with permission) straight from a Facebook posting.
Suppressive Therapy Notes - by Nancy Petersen, RN Ret. 3-16-14
on Sunday, March 16, 2014 at 2:53pm
One of the things we have not talked about is medical care the benefits others financially with little hope of helping us. There are legitimate reasons to do a hysterectomy, you have heard me say that before: heavy uncontrolled bleeding, carcinoma in situ not responding or cancerous cells on d&c, severe adenomyosis unresponsive to period suppression, and perhaps other issues related to the uterus. But taking the uterus alone or with tubes and ovaries does not treat endometriosis.
There are reasons to do suppressive therapy in women who do not want to give up their uterus but have a very painful one. And in women for whom access to a skilled endo surgeon is not possible and for whom multiple surgeries have already been done and pain persists. But it is important to unders stand that mediation does not treat endometriosis. It suppresses ovarian function thru several mechanisms on glands in the body, and the minute you quit taking medication, endo begins its journey back to full flare in most women. No medication has ever been shown to treat endometriosis, rather it manipulates your hormonal state to temporarily quiet the pain. Many women have break thru pain while spending thousands of dollars on hormones
One of the things that burns my buns though is to see doctors give you lupron for 6 months or any time frame then take you to surgery. What they have done is lined their pocket with lupron income, and made your endo harder to see for the unskilled doctor. Even teh specialists would prefer you not be on suppressive therapy before surgery because they want every opportunity to find all disease, which means disease needs to be active and irritated.
Another thing that bothers me a lot is fertility doctors who urge you not to have surgery, when we know removing lesions diminishes inflammation and improves conception in many who are having difficulty. Why would they do that? To not do surgery increases the risk of a failure of the IVF or other fertility work?
I don't know what to say about those who are offering lupron just before fertility work, since lupron is not approved for use when trying to conceive. Is it income generating? Is it harmful to a developing fetus? Is it contra-indicated?
Taking you to one surgery after another instead of referring you to a true specialist should also be suspect. It does not matter how nice the surgeon is, what is important is how skilled are they? How committed to removing your disease? If you have one surgery after another and are not getting any relief, you need to think about the potential that your disease has become income generating. Way to many patients have gone to surgery , been told their disease was removed only to get their operative and pathology reports to find what they were told was done and what was charted are two different things?
You should always request copies of your study results, operative reports, pathology reports and discharge summaries. Keep a set for your self. Consider reading them or getting a nurse to help you interpret them so you know exactly what went on.
Bottom line, if we keep doing what we have always done, we will keep getting what we have always gotten. Sometimes you have to change your game plan, you are worth the investment in better surgery, just be sure you get a surgeon known to do good endo surgery
Comments
Post a Comment