I recently had my first pre-operative appointment for the diagnostic laparoscopy I’m having soon. I was nervous, and had a list of questions for my doctor. This was the second gynecologist I’d seen to discuss diagnosing endometriosis; my other doctor is too elderly to operate. She was frank and very straightforward.
“There are two options for diagnosis: a laparoscopy and chemically-induced menopause with Lupron. If we do a laparoscopy and find nothing, we still have other diagnostic options. It’s a good sign that you’re doing better after a brief time on hormone-replacement therapy and then extended-course birth control. If we do find nothing, we’ll try Lupron, which will chemically induce menopause. If Lupron doesn’t work, you don’t have endometriosis, and you’ll be looking at other tests.
We’ll schedule you for one more pre-operative appointment where you can ask all the questions you have and you’ll register with the hospital where the surgery will be performed. You’ll go home the same day, and you should take it easy for three days. In two weeks, you’ll have a follow-up appointment where we’ll go over what we found inside your pelvis and check your surgery sites for infection.
Then, assuming you do have endometriosis, we’re going to evaluate you every six months to a year. You’re going to tell me how much this disease is affecting your quality of life. If the pain and immobility returns within a year and your current treatment options stop working, we’ll try inducing menopause.
Lupron has its risks, but it allows us to achieve valuable steps both in terms of symptoms and diagnosis. You’ll get an injection every three months. When you decide you want to try pregnancy or want to stop the course of treatment, you’ll stop the shots and return to your natural hormone cycle. The effects of this shot are reversible. If you do have endometriosis, Lupron will relieve all your symptoms. We’ll also know for certain that this is endometriosis. If you still experience pelvic pain and cramping while using Lupron, you don’t have endometriosis. The side effects may be intense, but it’s something to consider if you get worse over the next few decades.”
I told her I was worried about the surgery itself. It’s a very common diagnostic procedure; it’s minor surgery and thousands of women undergo it every year. However, a close relative of mine underwent a diagnostic laparoscopy in her early twenties for endometriosis and her doctors decided to give her a hysterectomy. Obviously, her health history was somewhat different and it was medically necessary. Still, it’s hard to sign up for a small procedure if you could wake up without one or both ovaries or all your reproductive organs.
She asked me when this happened. It was the 1970s. She leaned forward and said, “That was a very long time ago, and medicine has come a long way since then. The biggest difference is that there were no female surgeons and very little research on the risks of hysterectomies on very young women. We’re not going to remove any of your organs, no matter how bad the extent of your endometrial implants. You’re much too young, and your imaging shows no tumors or large cysts. There’s no reason to put you through that. You may decide you want to have children later in life, but that’s not the main motivation for keeping your organs. Where do your hormones come from?”
“Yes, and they’re very important to your overall health. You need to keep them. If you were 50 and approaching menopause, we’d be having a different conversation. I want you to write down any questions you may have, but I don’t want you to be concerned with keeping your organs.”
We then went over what a laparoscopy is. I’ll be put under anesthesia and my abdomen will be inflated through my navel. The surgeon will insert an instrument to manipulate my uterus. She will then insert a very small camera through my navel and a cauterizing tool. If she finds evidence of endometriosis, she will use the cauterizing tool to ablate, or burn away, the endometrial tissue. I thought this would take hours. She said it should only take a very short time; the large time frame for the surgery is to regulate my sedation and anesthesia. After the ablation, my abdomen will be deflated and they will move me to recover from the anesthesia. I’ll go home the same day.
In another week, I’ll have one more pre-operative appointment where I can discuss some of the questions raised from responses on this site and register with the hospital where the surgery will be performed. I’m anxious, but I’ve done some research and feel comfortable with my choice of surgeon. With any luck, I’ll have a diagnosis and a treatment plan within another month.
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Oh also my first surgery when I was diagnosed with endo was cauterization and I did experience significant relief for approximately a 18 months. My latest surgery for endo last summer was excision and I had some relief but not significant. Both surgeons were great but my pain levels are affected by other pelvic pain conditions and my lifestyle is quite different now than it was when I was a teen. Since so little is known about endometriosis it is hard to say what will work for you or anyone; although often people think that what worked for them be it medication, diet, surgical technique or a specific doctor/clinic will work for everyone. Once again I hope that you experience a significant reduction in your pain levels and an improved quality of life as a result of your upcoming procedure
I was diagnosed with endometriosis in 1999. It is good that you are going to receive treatment, however I am concerned that you were told that Lupron is used for diagnoses of endometriosis. The only definitive way to diagnose endometriosis is via laparoscopy. The Lupron website http://www.lupron.com has information about its recognized usage that may be helpful for you to look at. At any rate I hope that the surgery goes well and results in some relief for you.
You know what I don’t think I read that about you not affording the excision. I am sorry about that.
The injection itself in Canada for 3 months is $1500 do you have insurance for that? I never realized how expensive it was and I am so thankful my work insurance covered it.
I really wish you all the best in your surgery and I hope it relieves your pain.
I’ve never heard of Lupron being used as a diagnostic tool. Not all doctors promote Lupron. I’ve found that the more endometriosis patients a doctor sees the less likely he/she is to promote Lupron (probably because most endometriosis patients hate Lupron). Personally I would pick a lap over Lupron any day. I’ve had 5 laps and 4 courses of Lupron. My most aggressive Lupron was preceded and then followed by a Lap (because the Lupron hadn’t helped with pain) and my doctor said she had never seen such severe endometriosis growth following such rigorous BC and Lupron treatment. I think the biggest thing to know when dealing with Endometriosis is that every patient is different. I have read about people helped by Lupron and those who weren’t. Some people benefit from dietary changes (I personally promote dietary changes for symptom relief). Very few people find something that works for them immediately (which is why I hate the promotion of Lupron) because Endometriosis is a journey (granted, a pretty awful one) and finding the right treatment takes time, trial and error. Best of luck with your Lap and if you have any questions, don’t hesitate to ask!
Angela, I’m so sorry you’ve been through so much suffering due to this disease.
My doctor isn’t eager to put me on Lupron. She said she’d be pleased if extended-cycle birth control works for me for as long as possible.
The time span is a factor. She mentioned how thie disease may change over the years and decades. Lupron would be an option if I became completely immobile again and crippled by severe pain. I don’t want to go through menopause at this point in my life. It’s simply an option to consider if my quality of life plummets due to this disease. I don’t know if I could handle another four or five months in bed in constant pain. If Lupron was an option at that point, I’d take it despite the possible risks.
I also believe I’ve mentioned that I can’t afford to have an excision for several years. I hope to, though. Thanks for sharing your experiences.
Respectfully submitted: anything other than surgical confirmation of endometriosis is considered uncertain [Diagnosis & Management of Endometriosis: Pathophysiology to Practice. Association of Professors of Gynecology & Obstetrics. Women’s Health Education Module, 2013].
To wit: “Gonadotropin-releasing hormone (GnRH) agonists have been advocated to diagnose and treat endometriosis without performing laparoscopy, based primarily on the results of *one study involving 95 women* [emphasis mine] with moderate to severe chronic pelvic pain unrelated to menstruation who were randomized to receive depo-leuprolide 3.75 mg or placebo injection monthly for three months followed by laparoscopy. The underlying premise was that improved pain symptoms during the hypoestrogenic state induced by GnRH agonist treatment might reliably indicate that endometriosis was the cause. *However* [emphasis mine], pain relief in response to depo-leuprolide was not significantly different in those who did or did not have detectable endometriosis at laparoscopy (81.8% vs. 72.7%, respectively). Therefore, *the response to depo-leuprolide did not accurately diagnose the disease* [emphasis mine] [Practice Committee of the American Society for Reproductive Medicine. Treatment of pelvic pain associated with endometriosis. Vol. 90, Suppl 3, November 2008].
Moreover: “What about the currently popular practice of using a GnRH agonist (e.g. Lupron) without doing a laparoscopy first? This has become common practice since the publication of a study by the drug’s manufacturer several years ago. The study showed that 82% of women with pelvic pain that had not responded to milder pain medications or antibiotics were shown to have endometriosis. When Lupron was given and the ovaries temporarily shut off, pain improved. However, pain was also reduced in the women who did not have endometriosis. This happens because hormones made by the ovaries influence pain perception. Therefore, when pain gets better after Lupron is given, it does not necessarily mean that the pain is due to endometriosis. *Failure to understand this leads to incorrect diagnosis in at least 25% of cases* [emphasis mine]. In addition, some forms of endometriosis do not respond to this drug. Its expense and high level of side effects (e.g. rapid loss of bone calcium) also make it a drug to be used with caution. Our experience is that using the drug before doing a laparoscopy most often delays, but does not eliminate, the ultimate need for laparoscopy” [University of North Carolina at Chapel Hill School of Medicine, Division of Advanced Laparoscopy & Pelvic Pain. 2013. Web access http://www.med.unc.edu/obgyn/Patient_Care/specialty-services/advanced-laparoscopy-pelvic-pain/endometriosis%5D
And: “Laparoscopic inspection of the pelvis is the gold standard for diagnosis of endometriosis…” [Burney, R. O. and Giudice, L. C. (2012) Diagnosis of Endometriosis: Transcriptomics, in Endometriosis: Science & Practice (Eds L. C. Giudice, J. L. H. Evers and D. L. Healy), 2012. Wiley-Blackwell, Oxford, UK.]
So on and so forth. There is evidence in abundance qualifying the need for laparoscopic inspection to confirm the diagnosis – and effective treatment of – endometriosis. A non-invasive diagnostic test would be especially useful in the endometriosis and gynepathology community, indeed; however, despite ongoing research and development of many, many such potential tests and markers, not a single one has achieved benchmark and cannot be relief upon. Indeed, medical therapy in particular should not be evidence of a diagnosis; nor has any medical therapy ever ‘cured the disease’ [Reich, 2012]. They are used merely to temporarily suppress some of the symptoms associated with endometriosis; they are neither long-lasting nor wholly effective, and none are without side effects.
Meticulous laparoscopic excision (LAPEX), on the other hand, has significantly superior results to not only obtaining diagnosis through histological confirmation, but also to removing disease effectively while preserving healthy tissue and organs. Some specialty centers have rates as low as 7-10% recurrence in their patient populations as far as 20 years out from initial excision. The recurrence rate for ablation and vaporization, on the other hand, are very high – ranging around 40-60% within the very first year following surgery; some as high as 77% within the first 2 year [Chronic Pelvic Pain, Chap 4; Ed. Paolo Vercellini, 2011 Blackwell Publishing]. Superficial ablation and other topical removal of only obvious lesions results in disease left behind and in many cases, depositing carbon which can be painful on its own – as well as be confused for endometriosis at later surgical re-intervention [Nezhat et al.]
Of course; it goes without saying – all of this notwithstanding: what matters most is whether the patient is adequately relieved of her pain. To that end, wishing Rosalie the very best of luck in her journey.
I want to say I am very happy that you were able to sit down with this surgeon to get all your questions answered and she is right about the ovaries. No not have them removed. They can remove cysts off ovaries no matter how big or how diseased it all depends on the experience of the surgeon.
I think you are in good hands but I don’t agree with the Lupron theory at all.
Lupron yes will induce menopause but Lupron does not work for everyone that is why this disease is hard to understand.
After my first surgery I had 9 months of Lupron all at different times. It wasn’t the absolute worst thing but it wasn’t nice either and Lupron will NOT suppress Endo, nothing does.
The main key to Endo is Excising ALL of the Endo leaving none behind, that is very very important as 75% of women that has had a skilled surgeon excise their Endo out have had significant relief. I am one of those.
However my pain did come back 6 yrs later even being on the continuous BCP for 85% of the time and Lupron the rest. I was trying to get another surgery done because I was having bowel and urinary symptoms so I did the ultrasound and I had fluid in the cul-de-sac which is also an indicator of Endo. He said he wanted me on Lupron and if the fluid disappeared and the pain went away he would operate on me. Well the pain didn’t go away and I still had the symptoms plus painful sex. He told me it wasn’t Endo and refused to operate on me since my first surgery was so extensive due to deep infiltrating Endometriosis so he said I had “Neuropathic pain syndrome” I left that office in tears and cried for 4 hours straight.
I couldn’t accept that because Lupron didn’t do anything for me but cause me to go crazy in the head, with joint and muscle pain.
I ended up at Wasser Pain Management Clinic and 3 yrs later she finally did surgery on me. I wasn’t having menstrual pain because I wasn’t getting my period but throughout the years I did end up in the hospital with severe pain that they couldn’t detect why. One test showed fluid in and around my enlarged tube the other showed an enlarged lymphnode in my LRQ and elevated WBC.
Finally when operated on there was a ton of scar tissue and I had a partial bowel obstruction from it but I also had a bowel surgery when I was 7 so I am prone to the Adhesions in that area. My right ovary and ureter were and still are embedded into the pelvic wall. She couldn’t remove them and I am now still having issues with pain there.
They found carbon residue on my bladder flap from the previous surgery which is caused by laser that is why Excision is so important.
Dr. Redwine said the carbon residue is like having a splinter and that is what can cause the pain people feel is Endo returning.
Behind the Cul-de-sac there was superficial Endo and that was removed. Also the wording that was put on my surgery paperwork was either poorly written by an intern or it is possible it wasn’t Endo that they found as per Dr. Redwine as I asked him his opinion on my results.
So for me I had severe Deep infiltrating Endometriosis (DIE)Stage IV in 2007 and with all the treatments and suppression on my period I experienced limited pain. I mean I can barely remember how painful the pain was because it has been so long and my first surgery was done by someone who knew what he was doing.
For the first time recently I came off the pill for Thyroid testing and my first period in 7 yrs was insane.
So for me I really don’t think Lupron does anything but suppress your periods and if after your surgery you can take something less powerful like a low dose BCP everyday without missing a day so you don’t get your period than I think you would be better off.
A doctor will always tell you to take Lupron and I am not telling you not to I am just letting you know my experience and my thoughts. Everyone reacts to it differently.