March is Endometriosis Awareness Month, and I realized what a better way to start out than to talk about doctor drama. Endometriosis has some sobering statistics, it is a disease that 1 in 10 women are likely to have, AND the average amount of time it takes to get a diagnosis is 10 YEARS! Add in that in many cases Endometriosis is believed to be a progressive illness and you’ve got some very needlessly sick chicas. So much of the problem is related to poorly trained gynecologists, and not enough public awareness. I am not alone in spending years going from doctor to doctor complaining about my period with no results other than being made to feel weak and insane.
Unfortunately for many of us the doctor trouble doesn’t stop at diagnosis. Many gynecologists do not follow the Endometriosis Research Center‘s guidelines for laproscopy. The gold standard for surgical treatment of Endometriosis is minimally invasive laproscopy with excision. However, many gynecologists are not trained in recognizing endometriosis implants, and continue to use ablation methods. Ablation is not recommended as it is harder to get biopsies, and also burning tissue doesn’t allow the surgeon to see if they have proper depth to remove the entire implant.
Women who have ablation often begin experiencing symptoms sooner than women who had excision, and thus need surgery or more radical treatment of their disease. Which also often means finding a new doctor.
In my case I did have excision surgery, though my symptoms returned after an ongoing bleed on birth control about 6 weeks after surgery. Between a full month of spotting on my first pill, and the higher estrogen dose to stop the bleeding causes my endometriosis to go into a frenzy = agony.
At this point it was already clear my gynecologist was becoming uncomfortable with treating my case. It was actually my primary care who recommended and coaxed in me into starting Lupron. Already I was pretty complicated and messy for my gynecologist to deal with, and a couple of factors made this even worse:
- NSAID allergy! Essentially my only non prescription option for pain is Tylenol. When my pain is moderate to severe I need opiates, and I get no anti-inflammatory benefit from my pain management.
- Norethindrone and I don’t get along! Norethindrone is the recommended add back progestin for Lupron. For me is causes deep cystic acne (potential allergy!), lethargy, and depression.
- Ongoing pelvic/intestinal spasms, bloating and pain after bowel movements, and no other GI symptoms after 2 months of Lupron other than occasional constipation. Incredibly annoying and a head scratcher of a symptom.
These three issues turned my gynecologist’s office and I into enemies during my second month of Lupron.
I was told to expect some pain from a mini clinical flare in month two. I had a reasonable amount of pain my first two weeks of my second month. I was told to call if I needed pain medication. My doctor’s office was already on my last nerve with pain medication because they were only calling in quantities of 20, which is at MOST a five day supply. To go with the flow I would stretch these out to last a week to ten days. This time I call and the doctor is away at a conference and the PA refuses to fill it without his sign off. Finally midway through the next day I get told they will not fill it at all. I complained and got only a count of 12, and I got treated like shit. Thankfully the pain subsided after a few days and I still had some leftover.
The same day I called about the pain medication I also asked about starting hormones. My fatigue, depression, and hot flashes had gotten really bad. On top of being in pain I was having 5-10 hot flashes a day at minimum, was bone tired even after 12 hours of sleep, and down all the time. I specifically asked for something other than Norethindrone, and stated my reasons why. The only thing offered during the call back was Norethindrone. So I asked again going into more detail about my problems with the drug, and get the response, “Norethinedrone is the add back for Lupron”. I file complaint, and then the only thing offered was Natural Progesterone suppositories. Even though Provera comes in comparable doses and is the recommended add back progestin for post menopausal women. At this point it has been a week since my original request, and no relief.
Thankfully my primary care physician is my guardian angel and prescribed Provera at my appointment with him the following week. He also prescribed Bentyl for my intestinal spasms which unfortunately isn’t a complete fix for my post bowel movement hell but it stops a lot of the thumping.
Sooo . . . now for the grand finale! I show up at the office for my third injection. The assistant comes to bring me back to meet with the doctor and I asked when I was getting my shot. She tells me she didn’t bring it! They figured that because I was having so many problems I didn’t want it. We ended up having to race across town to the other office so I could get my injection!
My gynecologist was on his best behavior as my boyfriend was with me and I had been filing complaints left and right. He still hemmed and hawed a bit about using Provera off label. Regarding my post bowel movement pain he wanted me to go to GI and attempted to imply that my PCP thought so too since he had prescribed the bentyl. My PCP by the way believes my problems are definitely Endo related. My gynecologist has no thoughts on what the GI issue could be. He dismisses the thought that it could be adhesions (the problem is identical to my bowel adhesion issues pre-surgery), and his best recommendation was that it was maybe a habit. He goes on about how I’m complicated, even though compared to other endometriosis he has seen I’m in pretty good shape.
At this point I have an appointment with an Endometriosis specialist in April, and I have things together enough mostly due to my PCP to continue receiving my shots through my current gyn office. Though it is clear we are going nowhere.
For whatever reason my body is very sensitive to hormones on multiple levels. What is sad and horrifying to me is that birth control pills (which are standard treatment of endo) have time and time again proven to be a dangerous accelerant for my disease. Also, my body hates certain progestins.
My current doctor is not comfortable enough with the hormone options available to help me understand what is going on, and how to make it better. Also, I want a real opinion from a gynecologist on my post bowel movement issues. I see it as being one of three things: my body still healing from 3 months of endo hell, adhesions formed by 3 months of endo hell, or some mysterious GI phenomenon. Two of the three potential outcomes are gynecology related, and should not be blown off.
Also, what is frighteningly clear is that how much endo is present is not a clear indicator of treatment difficulty. Also, I now question that something might have been missed. I have no clue why I am having so many problems. I’m in the dark and it is very scary to not have a reliable specialist to help guide the way.
I am thankful for Lupron, and for my primary care physician. Between the two my life is now livable and tolerable. Everyone has noticed that I’m back. Lupron is also going to buy me the precious time I need to find a doctor who can help me through this. Having a compassionate, smart, and daring primary care physician has also been a huge help. Thanks to him I have the adjunct medications I need, all of which my gynecologist should be prescribing.
This is a long and convoluted story, though this is so often how it goes with endometriosis. I hope that this gives pause to any woman reading who suspects they have this disease, or is currently struggling with it. I hope all of us find good doctors who understand the complexity of this illness, and our bodies which tend to be so fragile.