A big decision whether to begin Lupron injections
Im not sure why I thought I would be able to go to sleep tonight without writing this blog. So much has happened today and while in part this is to help others struggling through this big decision, this is also here to help me disseminate all the information that was thrown at me.
Back in March I went through a Laporoscopic excision surgery with Dr. X at the BC Women’s Pain and Endometriosis center here in Vancouver. She was able to remove endometriosis from my colon, bladder, ribs and cauterize what she could find on my diaphragm, leaving the implants within my diaphragm intact. During the surgery she also did an ovarian suspension on my left ovary and cleaned out my left tube. Before and after surgery I was instructed to try Visanne to both reduce the endometrial pain through skipping my periods, but to also thin my lining with progestin (estrogen depletion).
Three months post surgery I was rendered helpless in pain from upper abdominal pain. Since I have ulcerative colitis which is a relatively new diagnosis, my village of doctors first had to rule out digestive issues. My CRP levels were good, Calprotectin levels normal, a small blip of liver enzymes and pancreatic enzymes which resumed to normal, and clear CT/Xray/MRcp ruled out digestive problems. The more we ruled out UC the more we pointed toward Endo. I called to make a follow up appointment with my endo specialist and it took 2 months before I could see her. Today was the big day…
Leading up the appointment I was starting to get wrist/joint pain to the extreme measure. I have had to take three breaks in writing this post already because of it. I wear a gimpy brace to ensure I dont move them around too much. My left ovary is on fire. My lungs, exacerbated by the fires on the west, are struggling to fill. And my leg pain is coming back much like before the surgery – the kind that feels like sciatica. I am on limited NSAIDs due to the intestinal bleeding that naproxen can cause in UC patients – the one drug that does help my endo pain – and I am on a single dose of tramacet since it knocks me right out so I am reduced to taking this at night only.
At my appointment Dr. X reviewed my surgery results, the scans from the last two months, and asked me about my pain. She told me that the wrist and joint pain could be from estrogen depletion as a result of the Visanne. Since my endo pain in my lower parts is cyclic and I have break through bleeding the visanne is not working. Her suggestion was (quite quickly I might add) to put me on three months of LUPRON DEPOT to determine whether the pain is in fact endo. This drug would deplete my estrogen completely and put me into chemical menopause. If it works we know it is endo and we can either stay on Lupron or she can refer me to a doctor who can excise the diaphragmatic endo. But to commit to VATS right away is both dangerous and not smart. She left me to look at a brochure while she conducted an ultrasound on another patient, came back to ask if things seemed reasonable as a course of action and spent some time going over how this would work: I would order the medication and have it sent to her office, for an injection to be administered once a month for three months. In addition, to counter the side effects she would also prescribe an estrogen patch twice a week, and some biologic to take orally everyday. These additional medications are called ‘add backs’ because they add back what Lupron will deplete from my body.
Before you know it I was signing up for the medication and promising to come back in a month for the follow up. I asked her politely if I could get the referral to Dr. Sony Singh – the doctor she recommended I ultimately see for the VATS – as I am moving to Ottawa where he is located. Unfortunately the response was more of a ‘when the time comes we can call him’ rather than a ‘sure lets see if he can take over’. So it seems I walked away with the commitment to use Lupron as a diagnostic to rule in the endo and move forward with one of two options in three months from now.
When I got home, I thought, ‘How in hell did this happen so quickly? I have already read up on how nasty this drug is. Maybe there is an upside??’ Sadly out of nearly 40 messages compiled in response to my pleas 2 were positive/neutral outcomes while the other 38 were HELL NO!
While I am still (kind of) weighing out the pros and cons I am determined to get a second and third opinion from other endo specialists. Thank you to all of you who shared your stories with me over the last 12 hours; they have helped my clarity and to regain my strength. For those of you who have suffered long and hard from this medication – due to the lack of options that are available for endometriosis – I will help to fight this fight for you. #endowarriors til the end!