Some good advice...

From: Helen Dynda (olddad66@runestone.net)
Sun Sep 9 01:16:57 2001


Heather Guidone is the Coordinator of the Endometriosis Pavilion. Here she is responding to Angie's message:

~ ~ ~ ~

[]] Help!!! Don't agree with doctor!!! ... Posted: Thu, 21 Jan 1999 21:39:54 -0600 (CST) http://forums.obgyn.net/endo/ENDO.9901/1801.html Angie: My doctor is going to use the laparoscopy to just "look and see" what's going on - then insists on treating w/hormones or BCP. I asked if - while he was already doing the lap surgery - if he would consider just removing the endo he finds. He says he never does this on women my age, who want to still have children (I am 25). He says the endo usually lies too close or on main veins and the ureter and other organs; and that he would have to remove some of my reproductive organs, if I wanted this type of surgery. Is this true?

Heather Guidone: Now, I am no doctor (nor do I play one on TV) BUT...I strongly object to this doctor's handling of Endo. No, there is no reason on earth why he can't excise or ablate or otherwise remove the Endo that is present. It is frankly, in my humble opinion, wrong to subject a patient to a surgical procedure for diagnostic purposes; and then sew her back up and send her on her way with the disease still intact. It happens everyday, I know; but I still think it's wrong. A lap actually can help preserve or restore a patient's fertility; and studies have shown how effective a thorough lap surgery can be in acheiving conception.

I do not understand his comment about not doing a therapeutic lap on women, who have not yet completed their families. The gold standard in the medical community for diagnosis of Endo as well as helping to achieve pregnancy is indeed a lap! Yes, in certain patients, Endo does lie close to the major arteries and veins. Qualified Endo surgeons will remove it from these areas; and those who do not feel confident addressing lesions in those areas have someone assist them in the surgery, who is.

Two common surgeries done to assist with pain are, in fact, procedures of that nature - the LUNA (laparoscopic uterosacral nerve ablation) and PSN (presacral neurectomy). The LUNA carries less risk than the PSN due to the close proximity of the vena cava, when performing an PSN; but they are done everyday by Endo surgeons the world over. And NO, he would NOT have to remove your reproductive organs in order to perform a lap and treat your Endo. There is a monumental difference between treating a patient's disease with a laparoscopy and subjecting her to a hysterectomy. And on that note, a hysterectomy is NOT in any way a definitive cure. If you have Endo in areas other than the reproductive organs - which he does not attempt to remove prior to performing a hysterectomy - you will have exactly the same problems you had before your uterus was removed.

Angie: Are drugs my only alternative at this point, if he does indeed find endo? Are there any surgery procedures he could do without harming my ability to try to conceive?

Heather: No, surgery is needed for a definitive diagnosis. Most doctors will also destroy the disease as much as they possibly can at that time as well. There is no reason why your fertility should be harmed by that procedure. Once you've had a diagnostic lap by a surgeon, the next step is usually to discuss follow-up - GnRH's, BCP's, Danazol, alternative meds and therapies, the "no-treatment" treatment, attempting pregnancy (which is not a treatment per se and often offers no relief of Endo symptoms, contrary to popular belief), etc.

Angie: HELP! My husband went out and bought me the "Endometriosis Sourcebook" last night - isn't he wonderful!! I plan on attacking that this afternoon; but thought I would post this to see what you all thought.

Heather: How wonderful that your spouse is interested and supportive. It is so important to have someone who understands (or at least tries to) when you are going through something as scary as Endo can be at times.

Angie: I finally got up enough nerve to call my doctor last evening; and he actually laughed at me and told me I was worrying for nothing -this is all very "normal and routine."

Heather: I personally would never go back to a doctor who dismissed my concerns and laughed off my worries. Especially one who thinks that he has to hysterectomize you in order to treat your possible Endo.

Angie: I hate that we have been raised to not question those in higher positions, such as doctors; and that my need to be nice and not hurt anyone's feelings may put my own health on the back burner. I actually felt like I needed to be careful what I asked him; because I didn't want him to feel like he needed to defend his procedures on doing things.

Heather: Knowledge is power. Once you understand more about the things that you can do to help yourself - and learn more about the disease - you will find that you feel better about standing up for yourself and demanding to be a partner in your health care. Remember, you and only you have final say in what happens to your body. You also have final say of what doctor you visit; and if one doesn't treat you well, find another. They are there to help you; not the other way around.

Honestly, I would put this surgery off, if I were you, in order to consult with someone who is more experienced in Endo. I mean no disrespect to your doctor and I am sure he's very good at what he does; but it just sounds like Endo is not his forte. There is no need for you to subject yourself to an ineffective surgery and be laughed at when you question the "why" and "how" of it all.

Just so you know, I understand where you are coming from; because I have been there myself. I think we all have. I have had this disease for over 15 yrs. now (stage 4 prior to my hysterectomy); and I have undergone a whopping 26 surgeries - most recent of which is a total hysterectomy/BSO. I battled infertility for 6 long years and went to literally 30 doctors or more. No one could help me. I was ignored. I was talked to like I just fell to earth. I was treated rudely. I was dismissed - the whole 9 yards. I think at one time or another, we all have.

Finally in 1997 I had the privilege of seeing an Endo specialist, who could not for the life of him figure out why no one had been able to help me more and why I had been forced to undergo surgery after surgery. He performed a 6+ hour laser excision surgery on me; and 4 weeks later, I was pregnant. I was not cured, by any means; but I was given the greatest gift possible and am delighted to say that my 8 month old son is sitting on my lap as we speak. So much for "just adopt, you'll never have kids!"

Unfortunately, I did have severe fibroids and adenomyosis, which ultimately required my hysterectomy; but if not for the help of that specialist, I would not be sitting here right now as happy as I am. So you see, I truly do understand; and if I can help you to not have to go down the path I went, then I will be a happy camper.

Now, this is completely out of character for me to write such long novellas on the Forum; and I apologize for the extreme length of this post. I hope I haven't bored you to tears. I just really want to stress the importance of seeing someone who can truly treat your Endo that you also feel comfortable with. Perhaps one of us can suggest a great doc to you?

I wish you the very best of luck, and please. Good luck and good health to you.

Fond regards, Heather Guidone Coordinator, Endometriosis Pavilion http://www.OBGYN.net/endo/endo.htm


Enter keywords:
Returns per screen: Require all keywords: