Excision Surgery Part 2: I Know My Body

We all say it, right? I know my body. I know when something is wrong. I know that something is suspiciously right. When you are sick 99% of the time, you know how your body feels with every sway and every stumble, and every new stimulus. You know all the different kinds of pain: from dull aches to shooting pain; from a 6 to a 9 to a ‘hmm… Im not sure if that’s pain or discomfort”. You know!

On day 10 post surgery something was happening. While I knew that tremendous amount of work had been done to remove my rectosigmoid colon from my abdomen, and subsequently my left ovary from the colon, I still understood what healing felt like. I also knew what an accidental tear or an over-exertion would feel like. It feels like a spike in pain that – with rest and medication – would eventually start to get better over time. This is exactly the opposite of what I started to feel. If you can imagine, the top of your left pelvic bone… go in about an inch and a half, and then hook up a car battery charger right there and press on the gas. Yeah that’s what I was feeling. It was right where an incision had been made, with a dull ache of 6 all day, and shooting voltage at 8 or 9 every 15min or so. First step was to run this by the surgeon who recommended I go get a urine culture done to rule out infection. Done. But the pain persisted with no medications bringing relief. By this point, say day 14, I wasnt even concentrating on the surgical healing, I was 100% focused on this ‘problem’. When I reached out to others on social media I was relieved to hear that it was normal, but that nagging voice inside of me kept telling me this surely wasnt normal.

Finally, I broke and went to emerg. I was given the most high level care from the minute I walked in. OK maybe not the minute I walked in. Maybe the minute the doctor saw me and understood how much pain I was in. But it wasnt the doctor I remember – though he was nice too – but the nurse. She was so caring and understanding of my gynecological issues. She gave me a hot blanket to put around my back, and one to put right on the spot that hurt. And then a shot of hydromorphone to calm be down. I was in bliss for about 20min until the hydromorphone spiked my pain much like I experience with morphine (I believe it’s hyperalgia they call it). They didn’t restrict me from more hydromorphone but the next dose – should I need it – was prepped for half the amount.

Long story short, infection and complications were ruled out by more urine cultures, an ultrasound and blood work. We even ran CRP to see if there was undue inflammation that could point to GI issues, but that was ruled out as well. Home I went. As a patient, you kinda lose your steam after awhile. I lost my steam for about 2 days. I was just so paralyzed with pain, disappointed that the meds weren’t working, and exhausted. But, as usual, to my rescue my doc offered to see me just to assess what was going on. No judgement, no preconceived notions, just a lot of listening and suggesting. We tried the logic that it was nerve related. Either an aggravated nerve due to the innervation of nerves around the surgical site, OR a new nerve pathway sending protective signals despite the removal of the stimulus. This in essence is central sensitization and not uncommon with laparoscopic excision of endometriosis. Doc gave me two nerve blocks, warned me the pain may get worse before it gets better, and then chatted with me about the findings of the surgery.

No endometriosis is still worth excision surgery.

I write this because time and time again I have had women reach out to me in tears, saying their worst fears came true: that the surgeon was not able to find any endometriosis and they feel like failures. Only a doctor can make you feel like a failure by giving you the notion that the surgery – the lap – was a waste of time. But as medicine and science go, we usually can only rule out. We dont rule in. So by enduring biopsies and the exploration through laparoscopy this is still a major milestone in your journey.

When I sat down to go over the findings, I was shocked (and relieved) to hear that the pathology for the biopsies from the left side (the side stuck to the colon by adhesions) was negative for endo, as were the various unusual spots taken from my diaphragm. Let me repeat. There was no endometriosis on my diaphragm. I would have expected this to make me feel mad, or sad, or something… But it didn’t. Because my surgeon told me we did everything right, and that for any residual pain We can rule OUT endometriosis but that still lends the way for other professionals to start taking a stab at hypotheses. This is exactly what your surgeon should be saying to you. This is exactly what your team of specialists should be reassuring you of. It’s never over, until its over.

All in all a great day!

I just hit the 4 week milestone, and I am feeling very optimistic about my recovery. One thing we did happen to modify during that last visit was swapping out gabapentin for amitriptyline which has been causing dizziness as expected, but otherwise, I even baked some cookies last night :).

I tried to be nice

Lupron Therapy for Endometriosis

I am utterly frustrated with myself because leading up to this blog article I have been able to convey information with an unbiased perspective, articulate both negative and positive outcomes of research, and have educated those who are less informed than I am. But this next article I have to write, I struggle to do with such poise. In fact, every bit of information that I want to pass along is in honor of those who have not found their voice yet; in honor of those who have not yet come to this crossroad; in honor of those who have spent years informing others and I can now echo their message.

If you or a loved one have been challenged with endometriosis, you know that inevitably the one symptom that has brought you to the doctor’s office or the Emergency room is pain. Pain is something that – with the exception of a few people – every mammal on this earth feels. We were built to be able to feel pain as a sign of danger. All of us can relate to pain as an external stimulus, but those of us with endometriosis have discovered that pain can also be caused by our own bodies attacking ourselves; something all autoimmune sufferers have in common. Both the heightened baseline at which you begin to tolerate pain after so many years of suffering, exacerbated by the mere fact that women are built to tolerate more pain, have resulted in centuries of ignored diagnoses, ugly looks, disregard, and ignorance to the root cause. If your doctor is truly ignorant they may send you home with painkillers (see below). If they are somewhat aware of endometriosis they may start you on birth control (see below) and if they are smart (and compassionate) they will refer you to a gynecologist or even better, an endometriosis specialist.

If I have learned anything over the years, communicating with so many women with endometriosis, no two women have walked the same medical path. So with brevity I will explain the various options that may be presented to you:

  1. Non-steroidal anti-inflammatory drugs such as advil or Naproxen. Sometimes when you approach your uninformed doctor about pelvic pain or lady issues they will start with a prescription of NSAIDs. Be careful not to take them too often, but definitely keep taking them if you need to. Maybe at the beginning this is all you will need.
  2. Birth Control – if you visit a doctor that remotely understands endometriosis they have at least been educated about the potential impact of elevated hormones that play a role in menstrual cramping. As such they tend to dole out prescriptions for birth control like candy. You will find that – upon trial and error en route to finding the right birth control – this may be an effective treatment.
  3. If the typical birth control containing both chemical forms of estrogen (estradiol) and progesterone (progestin) don’t work for you, your doctor may prescribe a progestin-only birth control to eradicate the production of estrogen altogether.  This is what I am currently on. According to a study written in 2014 by Wee-Stekly et al, A randomized clinical trial indicated that oral dienogest (Visanne) [was] more effective than a placebo in reducing pelvic pain in patients with a diagnosis of endometriosis. In combination with either form of birth control your doctor may also recommend taking your birth control continuously to abolish your cycle and avoid any peaks and valleys of sex hormones circulating in your body.

But this is where things get dangerous. If you get to this point and you are not already in the hands of a well educated, endometriosis specialist (NOTE: a Gynecologist is NOT an endometriosis specialist) you need to get one! There are three well known outcomes that could be presented to you. Here they are:

Positive – your specialist has now decided it is worth the risks of surgery to go in and do an excision surgery. If they are recommending an ablation you need to find another specialist. Consider excision like plucking, versus ablation which is like shaving; in the latter the root is still there. Having the right surgery will at least put you in reset mode if/until lesions begin to grow back, or adhesions start to form. Nonetheless this is a very positive outcome! Furthermore for women who are looking to conceive, a 2015 paper from Rizk et al concluded that

“In women with minimal and mild endometriosis, surgical excision or ablation of endometriosis is recommended as first line with doubling the pregnancy rate. In patients with moderate and severe endometriosis surgical excision also is recommended as first line. In patients who failed to conceive spontaneously after surgery, assisted reproduction is more effective than repeat surgery.”

Neutral – An increased rate of hysterectomies are being performed on women suffering from endometriosis, and of all reproductive ages. While a hysterectomy may improve the pain associated with menstruation,  this option should only be prescribed by the patient, after long hard deliberation, and of sound mind of someone who has completed their journey of child bearing. In a recent documentary produced by EndoWhat, (with the same movie title) specialists resounded the notion that if endometrial lesions are not also removed with the reproductive organs, endometriosis and its symptoms could still persist.

Removing the ovaries, fallopian tubes and uterus of a woman with Endometriosis will not cure the disease, because the endometrial lesions are elsewhere in her body. Endometriosis responds to estrogen, and even when a woman is no longer in possession of her ovaries, estrogen is produced in small amounts by her liver, adrenal glands and breast tissue. Phytoestrogens are also present in our environment. – Abby Norman, author of Ask me about my uterus

While this may be a solution for some (and quite frankly Im still trying to get more information from those who have undergone the procedure) it may not be the best option at the get-go.

Negative – this is where I have to take a pause, and write with elegance. More and more doctors (though the numbers should be going down) are offering their patients  a drug therapy called Leuprorelin (also known as Lupron). Leuprorelin was initially released on the market in 1985 as a drug therapy for advanced prostate cancer, administered as an injection. The mechanism of action is such that it acts like gonadotropin-releasing hormone (GnRH) hormone by binding to its receptors to (over)produce two hormones – luteinizing hormone (LH) and follicle-stimulating hormone(FSH) – which are involved in reproduction. However, because so much of these hormones are circulating in the system two things happen: 1) your body feels worse because these hormones stimulate increased production of those two sex hormones (estrogen and progesterone) that play a role in pain but then 2) the gonadotropin-releasing hormone (GnRH) receptors shut down because of over-stimulation and then all the other cascading hormones produced downstream are also shut off. This is the optimal end result of Leuprorelin; to shut down the production of sex hormones. Prostate cancer is powered by testosterone, so  shutting down production of this hormone is an effective treatment for this modality.

Given that the drug ALSO shuts down estrogen, in 1990 the drug was remarketed for the treatment of endometriosis. In this interview, makers of Leuprorelin commented “The most common side effects observed with Lupron Depot are those seen in menopause — hot flashes, mood swings, headaches and vaginal dryness. All side effects are reversible upon cessation of treatment” **for those of you taking Lupron, you can burst out laughing now**

Here is the reality. Lupron and all other (GnRH) stimulators should be administered with a number of ‘add backs’ – which according to Abbvie (the number one seller of Lupron) “Add-back is a daily pill that you take while on LUPRON DEPOT therapy to add back a small amount of the hormone progestin, which can help you manage certain side effects, without interfering with the way LUPRON DEPOT works.” What they fail to tell you is that along with the list of 10 side effects noted in the brochure that is provided to you, they advise you to go to the website and run through the full laundry list of side effects. More notably, these side effects are life altering, more severe than indicated by any prescribing doctor or Lupron care team, and irreversible. For instance on both their website and their brochure they do note that: Thinning of bones may occur during therapy with LUPRON DEPOT alone, which may not be completely reversible in all women… LUPRON DEPOT may cause harm to your unborn childSeizures have been observed in patients taking LUPRON DEPOT…Depression may worsen while taking norethindrone acetate. Patients who have a history of depression should be carefully observed during treatment. Here is my favourite though…

The most common side effects of LUPRON DEPOT included hot flashes/sweats, headache/migraine, decreased libido (interest in sex), depression/emotional lability (changes in mood), dizziness, nausea/vomiting, pain, vaginitis, and weight gain. These are not all of the possible side effects of LUPRON DEPOT. Talk to your doctor for medical advice about side effects.

This information was presented to me in full during my last visit to my endometriosis specialist and it was recommended to me that I fill out the forms during this sitting, set up my insurance for coverage and order the vial to be shipped to my local drug store (to be brought with me to my next appointment). I asked – for clarity – if she could instead refer me to a specialist who was comfortable removing the endometrial lesions she left on my diaphragm as this is where I was experiencing the most pain, but she said without a diagnostic trial of Lupron she did not feel a referral was necessary; that it was too premature. So I complied, filled out the paperwork, and went home feeling like I had just done something terrible. Then I did what I always do – I reached out to my endo sisters and was flooded with emotions upon hearing their stories about Lupron. The side effects, the impact on daily life, on relationships, on jobs, on childbearing or tending to loved ones. It was a resounding ‘NO’ on taking Lupron with a few sprinklings of positive or neutral reviews. As you can see from the graphic below, so kindly shared by endographics.org the positive reviews to exist and I want to make sure everyone understands this may be the right drug for you… But I want more than anything in the world for people to listen to their bodies, listen to their hearts, and do what is best for them! Many many pages exist out their on the lawsuits, deaths, and outcomes of Lupron. I am not here to go into that with you today (though tomorrow is another day). For now, I just want to bring this drug to your attention so that you are empowered the next time a doctor wants to order this for you. Find your voice, know your rights.

Thank you to Endographics.org for allowing me to share this image which so clearly depicts the details of Lupron (in a much better way than I have).

You can read more about endometriosis history here

For a much more thorough review on Lupron I suggest you make a pot of coffee and read HormonesMatter