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If you have endometriosis, you may have heard the words “excision surgery” before. Or, maybe you are new to the diagnosis and just trying to find out more information about the disease and current treatments. Whatever the case, I thought I’d share what I’ve learned from various treatments and experiences, including my excision surgery for endometriosis a year ago.
Before I get into discussing excision surgery, I’ll quickly share my endo story. I began having problems when I was 14 with pain in my abdomen but it was later attributed to ovarian cysts. I had a couple of surgeries to deal with that, including the removal of my appendix so it was never an issue. After about 15 years (in 2013) and going through a couple of doctors, I finally found someone who knew what he was doing. I was diagnosed with endometriosis, pelvic congestion syndrome, adenomyosis, as well as painful ovulation and frequent ovarian cysts.
Last year, my doctor and I had a discussion about the next steps we should take for treatment options. I had been through different birth control methods, had 6 laproscopic surgeries in 2.5 years, and had just recently tried an IUD. After a horrendous experience with the Mirena, we decided to remove it and figure out the next step. I was given two options at the time-have an expensive and experimental excision surgery or try the Depo Lupron shot. A hysterectomy is not currently a part of our plan because of my age and our desire to have another child if possible (it’s been about 5.5 years since we decided to try for another baby).
Both options were expensive and there was no guarantee they would work. Ultimately, because of cost and the horrible side effects I learned about, we chose not to try the Depo Lupron. I’m a firm believer in listening to your intuition and mine was telling me to run as far away as I could from the Lupron shot. It just wasn’t for me. So that left the excision surgery as my only option.
I was referred to Dr. Arrington at EndoWest in Ogden, Utah. Lucky for us, Ogden is less than two hours away. We found out that women travel all over the world to come and see him for this surgery. He was a great doctor and made sure we understood all the facts before moving on. Because the surgery is considered experimental by some insurance companies, including ours, it was an out of pocket procedure and not cheap. We were down to our final treatment options though so we went for it.
Please keep in mind when reading this that this article is from my own experience, research, and discussions with my doctors.
Here are the basic facts of an Excision Surgery for Endometriosis vs. Laparoscopic
- Excision Surgery is not used to diagnose endometriosis.
- Excision Surgery for endometriosis is generally used after other treatment methods have failed.
- Not all OB/GYNS’s and surgeons are qualified for excision surgery for endometriosis.
- Excision Surgery for Endometriosis recognizes all forms of endometriosis and the surgeon has the skills to remove it.
- It is a worthwhile option as opposed to more extreme cures, including hysterectomy.
- Excision Surgery for Endometriosis is not a guaranteed cure but the results are hopeful for many patients.
Excision Surgery is Not Used to Diagnose Endometriosis
I have yet to hear of anyone using this surgery to diagnose endo. Most women will have had the diagnosis for some time before heading for an excision. In my experience, this option was not given to me until we had tried several other things. I had also had a laparoscopic surgery already to officially diagnose me. Laparoscopic surgery is less invasive, cheaper, and usually approved by insurance companies. The recovery is much easier as well. And often, a lap is all that is needed for women to feel better and some only require one. It really depends on the patient and their individual cases. Occasionally, women can receive a diagnosis from an ultrasound or MRI but most of these types of scans cannot see the endo and will come back looking “normal”.
Many patients have had prior surgical treatment of endometriosis. Unfortunately many of them have had incomplete treatment of the disease due to not recognizing all forms of endometriosis or due to a surgeon who does not have the skills to remove the disease near or in critical organs.
Excision Surgery for Endometriosis is Generally Used After Other Treatment Methods Have Failed
This was the case for me and for many other friends and women I have met. After the initial diagnosis, most doctors will put their patients on some sort of birth control. This was never really an option for me because we were trying to have a baby, but I was put on a high dose progesterone pill for a couple of months to shock my system and later an hormonal IUD. When I was a teenager, and dealing with cysts, I was also on several different forms of birth control. Unfortunately, none of them ever worked and the next solution was always to try a different type. It was frustrating to jump from one pill to the next, especially dealing with all the side effects and not seeing any improvement. At one point, I was put on a double dose, taking two pills a day (one in the morning and one at night).
“Most patients are offered hormonal therapy well before the diagnosis of endometriosis is actually made. This may come in the form of birth control pills (BCPs), progesterone only pills (POPs), long acting progesterone medicines, and GnRH agonists such as Lupron or Zoladex. It is important to understand that the goal of any hormone or medical therapy is to control the symptoms of endometriosis. Usually the control of pain associated with the disease. Hormones are not meant to make the disease “go away”. In some patients, hormones can help them be more comfortable on a daily basis. Usually the symptoms will return after the hormone therapy is stopped.
This is critical to understand when considering GnRH agonist therapy. These are very potent hormone medicines that place patients into a temporary state of menopause. Due to side effects such as bone loss, these therapies are limited to 9-12 months of use. Usually the bone loss recovers, but it may not if repeated courses of therapy are used. Up to 12% of patients will also have prolonged ovarian failure. Once the medicine is stopped, nearly 75% of patients will have a return of symptoms. The disease does not “magically go away.”’ (From EndoWest)
After so many years, I was beginning to feel like an experiment. And I was tired of pills and side effects. My body just doesn’t do well with hormones, the IUD being the most extreme example (I had several bad side effects from it and only lasted about 2 months with it).
My new doctor didn’t want me to have to continue trying new pills when none were working, so this became an option for us. At that point, the endo was growing back within a couple of months of having a laparoscopic surgery. It was time for something new and more dramatic. We also learned that the endo was growing on my rectum and around my bowels so a new form of treatment was needed.
Not all OB/GYN’s and surgeons are qualified for Excision Surgery for Endometriosis.
The goal of surgery should be the “complete excision of all visible disease.” This means that a surgeon must have the ability to fully remove the endometriosis regardless of where it is located or what organs may be involved. Only gynecologists with advanced surgical skill are trained to remove endometriosis in critical areas such as the deep pelvic sidewall, intestines, bladder and around ureters.
After my surgery, Dr. Arrington informed us that I had a couple of different types of endometriosis found in my abdomen around my bowels, rectum, bladder, uterus, and also around nerves. In addition to removing the tissue, not just burning it off, he also cut a piece of nerve that was connected to my uterus. This is defnitely an experimental move and means that I can no longer feel my uterus. The reason we tried this is because I also have adenomyosis, which is endo that has grown into the muscle walls of the uterus itself. There is no way to remove the endo and the only way to treat it is to not feel it at all.
Excision recognizes all forms of endometriosis and the surgeon has the skills to remove it.
As mentioned before, when most doctors go in for a laproscopic surgery, they don’t generally go very deep into the pelvis and many do not recognize all forms of the disease itself. With excision surgery for endometriosis, the doctor is trained to find all forms of the disease and completely remove it from the areas where it is found. This means they cut out the diseased areas and also test the tissue to make sure they went deep enough into the tissue to remove all signs of endo.
It is a worthwhile option when compared to other treatments, including hysterectomy.
Hysterectomy IS NOT definitive treatment for endometriosis. Think about it for a second. By definition, endometriosis occurs outside the uterus. How can this disease be treated by removing a normal organ but leaving the disease behind. It makes no sense. In fact, hysterectomy is rarely needed to treat endometriosis. It is better to actually remove the disease that is causing the problem.
Thankfully, my current doctor has never been in a hurry to remove all my organs. It’s been encouraging to try and find something will work without a dramatic solution. I’ve also heard women share experiences of the endo coming back even after a hysterectomy. Be sure you have all the facts that you need and it feels right for you, especially if you’re still hoping for more children like me.
Excision Surgery for Endometriosis is not a guaranteed cure but the results are hopeful for many patients.
As with any treatment, there is never a guarantee. But the statistic I heard from my doctor was that about 70% of his patients had a decrease in pain and many never had to have surgery again because the endo didn’t come back. At the very least, it gives you more time before having to have another surgery. Keep in mind that every women’s body is different and be sure to talk with your doctor to find the right treatment for you. With endometriosis, you can’t put us all into a box. It’s all too different!
My results from Excision Surgery for Endometriosis:
I’m now about 8 months post-surgery. To be honest, the recovery was difficult, much harder than a laparoscopic recovery. I had to stay overnight in the hospital because I wasn’t able to relieve myself and needed a catheter. The pain was pretty intense even with the pain pump they inserted (thank goodness I had it though because it would have been so much worse). It took a few weeks to start to feel better again and I was out of work for about a week and a half.
The pain I experienced daily before the surgery has decreased, especially some of the bowel and bladder issues I had because of the endo. While my pain has not gone away completely, it is hard to tell if it’s because of the other issues I deal or from the endo coming back. Overall, I feel it was worth it and I’m grateful I had a great doctor so close to me who could perform the surgery. I felt like I was in good hands and that he genuinely cared about helping me.
If you’re deciding if excision surgery for endometriosis is right for you, I hope this information helps! If anything, you know your body best and can make a plan with your doctor. And don’t be afraid to find a new doctor if yours doesn’t seem to have your best interest in mind. I would encourage to try other treatments first before excision, unless you have an extreme case (and you and your doctor will know best).
Endometriosis is a horrible disease but they are constantly coming out with new information. Knowledge is power so arm yourself with resources and know the disease.
If you have any questions or would like more articles like this, please let me know. I’ve been battling this for 20 years and I’m happy to share what I’ve learned.
