Disclaimer: I am not a doctor and am not qualified to give medical advice. I am sharing my experience as a patient to help you make educated decisions about your own health, but please — consult with your doctor before making any changes to your current treatment plan or routine!
Hello, endo babes! I am always excited to bring you all another health update, but especially excited for this one because it’s also a life update… and sorry, it’s a long one. Who’s ready?!
*pause for dramatic effect* WE’RE MOVING TO RHODE ISLAND!
Back in March, David (my partner whom I also live with), who is finishing medical school this year, participated in the Match and found out his residency will be at Kent Hospital, affiliated with Brown University, in Rhode Island.
We’re both excited to begin this next chapter of our lives together, along with our dog Chandler — but since, as many of you know, I’m originally from Boston, I’m thrilled that I’ll be living just a short hour away from my closest family and friends again!
One of the downsides of the move, however, is that I’ll need to start building a new treatment team for my endometriosis — probably back in Boston, since it’s nearby and the hospitals there are, in my opinion, some of the best in the world. (Not to mention, I’m already familiar with the medical system there, though I hadn’t been diagnosed with suspected endo yet when I lived there.)
As many of you also know, I was scheduled to have my diagnostic laparoscopy for my endometriosis in August 2020. Needless to say, my laparoscopy is now on hold for the time being — not only because of the move, but also because of the coronavirus. COVID-19 has led to a swathe of cancelled surgeries, meaning mine likely would have been pushed off anyways.
I’ve posted a lot on Instagram about how emotional this time has been for me, so I won’t go through all those negative emotions again here. Instead, I’m trying to focus on the positive — which means putting together a new treatment team for my endometriosis and sharing a health update with you.
I’ll also be sharing my (mostly positive, so far) experience taking progesterone, now that it’s been (at the time of writing this) about two months now. In a previous health update, I shared that my doctor started me on norethindrone to help me skip my periods and manage my endometriosis pain until my surgery — and now that I’ve been taking it for awhile, I want to share how I’ve been feeling and the side effects I’m attributing to the minipill.
My Shortlist of Endometriosis Centers in New England
As my fellow endo babes know well, laparoscopic surgery is a delicate procedure that shouldn’t be handled by a general surgeon. It needs to be performed by a highly-trained minimally invasive gynecologic surgeon. But, since there aren’t many fellowships in this incredibly specialized field, the right surgeon can be difficult to come by.
Previously, I planned for surgery with Dr. Lindsey Valentine at Cleveland Clinic’s Center for Endometriosis and Chronic Pelvic Pain. I highly recommend her and can’t stress enough how comfortable she made me feel throughout the stages of scheduling my surgery.
Since we’re moving, surgery in Cleveland will no longer be a practical option, since I’m not interested in (and not even sure I’d be allowed to do) plane travel after having laparoscopic surgery. So, I’m trying to find a new surgeon with experience in minimally invasive gynecologic surgery and in treating endometriosis. After that, I’ll also need to find a new pelvic floor physical therapist, since we probably won’t be continuing telehealth appointments once the coronavirus chaos is over!
Rhode Island doesn’t have any specialized clinics (that I’ve found) for endo or chronic pelvic pain, so I’m turning to my hometown of Boston to take advantage of its world-renowned hospitals. So far, here’s my shortlist of Boston-based hospitals for endometriosis and chronic pelvic pain:
- Boston Children’s Hospital. Boston Children’s is one half of the Boston Endometriosis Center, a partnership between BCH and Brigham and Women’s. Because I’m 21 going on 22 (and the cutoff for BCH is 21), I’m in an awkward position where I could be treated at either hospital.
- Brigham and Women’s Hospital. This hospital in Boston is one of the best for a number of conditions and treatments, so I feel comfortable entrusting them with my care. As I noted previously, they’re also part of the Boston Endometriosis Center along with BCH.
- Beth Israel Deaconess Medical Center. BUT, my top choice right now for endometriosis treatment is Beth Israel’s Center for Endometriosis and Complex Pelvic Pain. Because I’ve been diagnosed with pelvic floor dysfunction and vulvodynia in addition to my endometriosis, I feel confident that their center can treat my case with empathy and knowledge, despite its many complications. They focus on a holistic approach that integrates treatments like acupuncture in addition to traditional medical approaches like laparoscopic surgery and pelvic floor physical therapy.
My Experience with Norethindrone (a.k.a. The Minipill), Two Months Later
Now, for the medication update…. in case you missed my previous blog post on the subject, I’ll fill you in on everything you need to know about norethindrone.
Norethindrone, also known as the “minipill,” is a progestin-only birth control pill. It works to prevent pregnancy by thickening the cervical mucus so sperm can’t pass through, but only works if you take it at the same time each day.
I’m not taking it for pregnancy protection, since I have a Liletta IUD that I’m extremely happy with (but let me know in the comments below if you want me to write a review of my current birth control method!). Instead, my doctor and I decided to layer additional hormones on top of my IUD to stop my periods, since I still get a monthly flow on the IUD.
My doctor figured that inhibiting my menstrual cycle would stop a lot of the negative symptoms I was having, such as horrible ovulation pain and uncomfortable bloating and constipation leading up to my period. So, I agreed to try it — and so far, I’ve been pleased with the results!
Inhibiting periods completely isn’t an ideal long-term solution for endometriosis pain, but I was all for trying a low dose of hormones as opposed to a shot to induce perimenopause — especially in the time leading up to my surgery. Now that my surgery has been pushed off further, I’m especially glad that I decided to start the minipill to manage my endometriosis symptoms, since who knows how long it will take them to squeeze me in now?
I’m pleased to report that my side effects from the minipill have been minimal thus far, and that it’s mostly doing what it promised to do for my overall health and well-being. I get far fewer cramps / muscle spasms throughout my cycle — David and I have both noted that I’ve spent much less time these past two months doubled over in pain — and haven’t had my typical period flow since I started the minipill.
What I have experienced on the minipill has been some mild spotting throughout my cycle (mostly light pink or brownish in color, and extremely light in flow) as well as breast enlargement and tenderness. The breast tenderness has been bothersome since it prevents me from engaging in strenuous exercise. As someone who has struggled with disordered eating, however, the most difficult side effect to manage has been the weight gain.
Previously, I was on a low-dose antipsychotic (which treated my depression by making my existing antidepressants more effective) that caused me to gain some weight — about 10 pounds in two months. I have since discontinued that medication and am happy with my current regimen for mental health. But, since weight gain is also a side effect of progesterone, I haven’t shed the excess weight as quickly as I thought I would after stopping the antipsychotic.
Granted, I do think that most of the weight gain has been in my boobs. As a small-chested girl, this seemed, at first, like a great problem to have — but it hasn’t been great for my wallet, since I’ve needed to replace a lot of my bras. Plus, as I mentioned, the breast swelling has caused a lot of tenderness that has made movement difficult…. I can’t imagine going for even a slow jog in my current state!
You might also be curious about how the minipill has affected my sexuality, since many birth control pills / hormone-based medications can impact sex drive and lubrication, among other things. Well, I’m happy to report that my libido hasn’t changed, but given that it was already low due to my chronic pelvic pain, I’m not sure if the medication has had any effect on it or not.
Still, I do think the minipill has affected my ability to achieve lubrication during sex. As I mentioned, the minipill prevents pregnancy by thickening cervical mucus — and while I’m not taking it to prevent pregnancy, I obviously can’t selectively choose which of the medication’s effects I do or don’t want.
In general, I’ve noticed thicker, drier discharge, similar to what I normally would experience after my period or toward the end of my cycle — only now, it’s all the time. Because the minipill prevents me from ovulating, I no longer have the stretchy, clear cervical mucus that indicates when I’m in my fertile window. This has caused some discomfort during sex, but using plenty of lube helps. I also plan to try the Replens vaginal moisturizer and will let you know how that goes!
Overall, I’ve experienced a few small side effects from the pill — but none of them compare to the benefits the minipill has had on my endometriosis pain. I’m not saying that hormone therapy is right for everyone, but in summation, I think that the pain relief I’ve gotten is more than worth a few uncomfortable side effects.
For me, the side effects of the minipill are definitely not bad enough to discontinue the medication, and the benefits absolutely justify continuing to take it. However, even after two cycles on the minipill, it’s still quite early to tell. I’ll check in a few months to let you know how my experience is going and if my opinion has changed after being on the minipill for a longer period of time!