Friday, September 16, 2016

Chronic Migraines and Fibromyalgia Make Treatment for Endometriosis Difficult

How it all started
After some troubling interactions with my GYN and her nurse since my endometriosis became problematic last year, I decided to start searching for a new GYN. Knowing that surgery might be an option down the road I wanted to make sure I got a great surgeon and someone who was truly interested in endometriosis.

The New Specialist
Talking with my sister, who is an OR nurse in a GYN surgical unit, I learned that there are folks who actually specialize in endometriosis. Armed with this new information, I turned to Google to research the specialty and search for them in the St. Louis area. I found just 3 doctors, 2 men and 1 woman. All other things being equal I chose to start with the woman. Yes, I did chose her because she is a woman. I'm sure the men are just as good but given the choice I'm just more comfortable with a woman.

So far I'm very happy with my choice. I'm impressed by her. She is a fairly new doc but after all her regular training and residencies, she did an additional 2 years of training in endo and fibroid minimally invasive surgeries. She is easy to talk to, respectful, does a good job of explaining things and her outcomes have been great.

Unexpectedly, she gave me an additional diagnosis of Pelvic Floor Dysfunction (PFD). She says this could be a source of some of my pelvic pain. Now, I had never even heard of PFD but was not surprised to hear that my pelvic floor muscle was in a spasm as I've had frequent muscle spasms all around my body for more than a decade. This would be just another muscle joining in. When I went online to research the condition I learned that I have a number of the symptoms associated with the it, including unexplained low back pain. Honestly, it was a relief to have an explanation for some crazy symptoms I've been having.

Treatment Options
At this point I've had all the necessary testing and my treatment options have been explained to me. Now I just need to decide what I want to do. Easier said than done. Here are my options:
1. The medical approach. Take hormone pills to manage the pain.
2. The conservative surgical approach. To have laperoscopic excision of the lesions.
3. Combine both. Have the surgery and then use medication to slow regrowth.

I love the idea of doing medication only. My last GYN had me on a combination pill, which she never should have done because I sometimes have aura. While on it, I did have a lot of relief from my endo pain and other symptoms, plus I even had saw a decrease in my most severe migraine pain. There was no benefit to my frequency and I did still get really severe migraines but not as many of them were in that category. A benefit I have deeply missed since going off them. The trouble with this medication was that I developed daily bleeding after 3 months. My new doc explained that was likely my body's reaction to skipping too many periods and not actually the medication itself.

Things get complicated
She suggests doing a progesterone only pill. I actually picked up the script for it earlier in the week and was freaked out by the informational insert that came with it. The list of dangerous side effects that necessitate immediate medical attention included 8 symptoms I experience regularly between my chronic migraines and fibromyalgia, like severe pain behind the eyes, pain in the lower legs, severe migraine, confusion, trouble sleeping... I don't think I can bring myself to take these pills mostly because I know myself well enough to know I would worry every time I experience these symptoms. Even under normal circumstances, feeling 99.999999% confident my symptoms are attributable to my chronic migraines and fibromyalgia, part of me is fearful when things are really bad. I know the fear and worry factor would ramp way up if I knew it could also be a dangerous side effect to a drug I was taking.

So that leaves me with the surgical option. I'm hesitant about that for a few reasons.
1. My last surgical experience was horrible. Everyone I encountered failed me. Obviously, I've learned many lessons from that and am taking precautions to ensure things go better in the future. I'm confident in this surgeon, the facility and the processes surrounding this procedure but I'm still gun shy.
2. I know that because I live with chronic pain the recovery will be longer than with normal healthy people. But I don't know what that will look like. I've had two laperoscopic procedures before but those did not include cutting into any abdominal tissue. I can't help but think it will be more painful.
3. I'm a little worried that I won't actually get any relief from the surgery. What if I put myself through all the pain, aggravation and expense of this surgery only to find that most of my pain was from this pelvic floor dysfunction? Or worse, what if something happens and I actually make matters worse.

I just want to make the right decision. But I can't know what the right decision is up front, which has made making the decision very difficult. I had originally hoped that I could give myself a few months to take the new pill and try to address my pelvic floor trouble with relaxation and maybe some acupuncture before pulling the trigger with the surgery. But if I can't bring myself to take the pill, that plan won't work. So now I'm just wondering if I should take my chances with the surgery or not.

Honestly, I don't know how to make this decision.


  1. I don't have endo but I've recently gone through some similar lady-parts issues and treatments and was also totally freaked out about my seemingly no-win choices. Luckily my treatment (surgery + hormones) seems to be working, and with no side effects after a few months adjustment. What helped me get through the initial anxiety of going through with treatment was researching my odds. In those little informational packets of doom they give you with birth control, they don't include what the frequency is of the side effects, just that they have happened to someone. Some statistics still worried me, but it helped calm my fears on some of the bigger issues, like stroke.

    Also, maybe a second opinion would help? Another doctor might have a new suggestion or perspective that could help you figure it out.

    Good luck! <3

    1. Thanks Steph! I appreciate your perspective and advice :)
      And I'm so glad to hear you are feeling better now.

  2. I am also having lady problems (fibroids, bleeding). My main concern is stroke. It's not a common side effect, but I do know someone who had a migraine-related stroke @ 19 and that has stayed with me for many years. I really just don't know what to do. I had aura as a child but haven't had them in many years.

    Good luck with your treatment!

    1. Those sorts of stories do have a way of making things seem very real. Thanks Maia!