living with stage four endometriosis
By: Fela M'tima
FELA: Hey! I’m really excited to chat with you about stage 4 endometriosis but before that, just your name, age, where you’re from and how long you’ve been battling endometriosis and adenomyosis?
JENNEH: Jenneh Bockari, 30, Los Angeles.
I’ve been battling endo/adeno since 2013
FELA: A big thing with stage 4 endometriosis is all the bizarre places it can be found and the crazy variety of symptoms! Can you explain your experience with those?
JENNEH: My symptoms were atypical as far as endo goes. My periods were always normal, scheduled, and no cramps or pelvic pain. My endo pain started with my thoracic endo symptoms, and then two years later, my pelvic symptoms showed up. The main symptoms I had from thoracic endo was pain in the right upper side of my stomach that was cyclical with my period. As time went on, the pain spread to my right neck, shoulder, and back. I began having shortness of breath, and intolerance to pretty much any physical activity. It was nearly impossible to sleep on my back, stomach, or right side. Eventually, I began having horrible fatigue, brain fog, nausea, constipation, and pain with sex.
FELA: What would you say are the most misleading facts about stage four endometriosis?
JENNEH: I think the most misleading thing is that endo only effects the pelvis. Many women have it in places outside of the pelvis, like the colon, bladder, diaphragm, etc.
FELA: I’ve followed a bit of you going through your last procedure in Atlanta, did you know before surgery if your endo had spread?
JENNEH: I had a feeling that it did, because I never had bowel issues or pelvic pain until this past year. My suspicions were confirmed when I went to the CEC and had a pelvic exam. Based on my symptoms, vaginal exam, and ultrasound, they were 99% that my endo was not only in my thoracic cavity anymore.
F: How has diaphragmatic endometriosis affected your life both physically and mentally?
J: How hasn’t it should be the question! I’m generally a very active person, so from a physical perspective, it was life altering. I went from easily running 5 miles a day, to barely being able to walk around my apartment without feeling short of breath. When my symptoms were at their worst, I constantly felt like I was suffocating. The pain was unbearable. I hardly slept because I could never get into a comfortable position. There wasn’t a second of the day where I wasn’t thinking about how poorly I felt. I mean when it comes to breathing, you kind of don’t have a choice, you obviously have to do it. Knowing that every breath felt like daggers in my chest every single day is like living in some kind of hell. Really, I can’t describe it any other way than that.
F: Wow, it never ceases to amaze me what endo can really do to that area. You and I have talked about that type of shoulder/arm/back pain caused by endo, do you think these symptoms are actually rare or that they just aren’t spoken about enough/diagnoised properly?
J: After dealing with this personally, and finding a network of so many other woman who have confirmed thoracic endo, I strongly believe it is under reported, and underdiagnosed.
F: You have had a few surgeries now and I know endo and adeno are still huge parts of your life. Explain some other things you do to help manage all those symptoms?
J: Well first, excision surgery has solved 80% of my endo related symptoms. The nausea, fatigue, brain fog, pretty much went away within a month after surgery. The diaphragm symptoms dramatically improved within the first 2-3 months post-excision. That is still a work in progress. I have found physical therapy and acupuncture to be extremely helpful in the residual muscle aches that I still have in my neck/back from years of guarding those areas due to pain. As far as adeno go, I also had a Presacral Neurectomy done at the CEC. During this procedure, they sever the nerve that sends pain signals to the uterus, so for now, I don’t experience any painful adeno symptoms. I also have pelvic floor dysfunction from endo. For that, seeing a pelvic floor physical therapist weekly has been a God sent.
Otherwise, I’ve continued a low inflammation diet. For me, dairy, some wheat products, and red meat were huge triggers for my pain. Though I’m not as sensitive to these things anymore, with adenomyosis, I’m weary to re-introduce these things to my diet. Also, being mindful of a diet that’s high in fiber and increasing my water intake, since constipation can be an issue with PFD and Adeno.
F: It’s so smart to tackle endo and adeno from all angles and I really think sometimes the only way to get relief. A lot of doctors have told women who express *strange* endo symptoms that “they are crazy” or “it’s all in your head”. How do you think us endosisters can work on making a change in the medical community? How do we get these doctors to take us seriously?
J: I think having a reliable way to track your symptoms so that your history is well accounted for, and reliable. Being a healthcare practitioner myself, it is always easier to truly understand the picture a patient is painting when they present them in an organized, and confident way. Also, I think being somewhat aggressive and demanding to be heard. If one doctor doesn’t listen, get a second opinion, third, fourth, even fifth if you need to. The fact of the matter is, you know your body better than anyone else. Do not let someone convince you that what you’re feeling isn’t real.
F: I completely agree! So, yesterday I had the pleasure of reading your boyfriend, Joesph’s, article on dating a woman with endometriosis. What a fantastic article and also, what a sweetie! I’m sure you feel so grateful to have him through this journey. How has he impacted your life with endometriosis?
J: He has practically been my crutch this past year. My symptoms got so bad that I ended up having to leave work for over a year. He took it upon himself to learn as much as he could about the disease. Together, we armed ourselves with information. From that point on, we were a team. He went to every appointment with me, and if I wasn’t feeling like myself, or my head wasn’t in the right place from brain fog, he advocated for me. His support has been so invaluable. Also from a social perspective, he genuinely felt my pain and what I was going through. I didn’t feel pressured to be “on” for him or fake how poorly I felt.
F: That is so wonderful to hear, we all need that support so damn much. It’s already scary enough when our pelvic area is ridden with pain constantly, but when the pain starts to travel I feel there is another level of depression that can hit us. How did you handle those feelings? Do you have any advice for women who are beginning to notice symptoms that their endo has spread?
J: That’s a tough one to answer since my progression was backwards in comparison to most women. For me, since my thoracic symptoms came first, I felt extremely isolated because no one understood it. Even when it was diagnosed as endo, I still felt like I couldn’t totally relate to other endo sufferers, since I never experienced pelvic pain. I found support groups to be really helpful. With that being said, I think the type of group you join makes all the difference. I’m generally not someone who likes to sulk in my misery. So groups that were mostly focused on emotional support weren’t all that helpful to me. Not to say I didn’t have some really dark days where I just wanted all of this to be over, no matter what that meant… but for the most part, I don’t like to stay in that place very long. For me, it isn’t productive. What I found most helpful were groups that encouraged education and empowerment. Where positive outcomes were shared just as often as negative ones. Groups that focused on solutions. That is how I got through this entire thing: actively participating in refusing to let this disease dictate my entire life.
F: Though you’ve had a few setbacks post op, I know you’ve had a lot of success too! So, let’s wrap up with some positive news! Tell me more about the amazing changes your last surgery has done for your diaphragmatic/thoracic symptoms?
J: It has been a night and day difference in every respect. For one, I can actually breathe again! I can sleep comfortably in any position. I’m no longer dependent on pain medication to function. Like I said before, there is still some functional work that needs to take place from all the havoc endo has wrecked over the years, but I’m 100% confident that I’ll be back to 100% before the end of this year.
Jenneh is now the co-founder of The Endo Co, a non-profit that sells bracelets to bring awareness and funds for Endometriosis.