Editor’s note: Dear reader, I hope you have enjoyed our 5 part series. Here is the final part. I hope it spurs you on to take that decision and action about your health. Cheers! Find Parts 1, 2, 3 and 4
Of hopes and gaslighting doctors
I was blooming with hope while waiting for the coming of this doctor. Prior to that, I had plans of moving to Nairobi, in fact, I had already started making accommodation and stay permit enquiries but the pain in my lungs and shoulders especially were getting worse, so I decided to put Nairobi on hold and wait for this doctor to come and fix me and girl was I in for some emotional damage.
My appointed day finally came. I wore all the hope and excitement I had on my sleeves, looked my best and went to the hospital. The gynaecologist was an older woman likely in her mid 50’s. The first thing she asked me was “how may I help you?” in a very condescending tone. Twenty percent of my excitement died instantly. Nonetheless, I went ahead and gave her my entire endometriosis history, only for her to ask me what I want from her (at this point, I rolled my eyes). Again I calmly explained to her that the endometriosis wasn’t removed during my surgery and it’s causing me a lot of pain so I want it removed.
Without examining me or asking any further questions, she said if the doctor left it, it means it can’t be removed and there’s nothing she can do about it. At this I was shocked. I was sitting there saying in my mind “this woman can’t be serious. She can’t possibly be serious right now!” These thoughts remained in my mind as I continued to stay calm, because you know; I needed help. So again, I explained to her that it can’t be left alone as it is giving me multiple problems and possibly invading my lungs as well. Then the ‘shockest’ of all shockers for the day was dropped on me. Madam said endometriosis cannot be in my lungs because the disease only occurs around the abdominal area. Wait what? Huh? Excuse me? Like hello? That was my Mary mother of God moment. I am not even a doctor and I know there is thoracic endometriosis which is endometriosis in the lungs. Yet again, I kept my cool and explained what thoracic endometriosis is, how I’ve been having the symptoms and how a doctor had told me it was possibly thoracic endometriosis causing those. For example, I can barely move my shoulders, laugh or even cough during my period without my chest, back, shoulders and ribs hurting badly. I tell people not to say funny things to me because laughing during my period is literally painful.
After that explanation, as if she hadn’t done enough, she basically said all of these symptoms were in my head. It took everything in me to not start crying that instant. In her words, I had programmed my mind and body into thinking I was going to be in pain every period and so the pain just happens. I have never been gaslighted like that in my life! I thought having dated a narcissist; I had seen gaslighting at it’s worst but nope! Doctor pulled one right out of her coat. Listen I know I have said a lot of “at this point” but at this point!!!! I felt so saddened and hopeless that I couldn’t even find it in me to get angry. To test her knowledge of endometriosis, I asked her about the pain I have in my ankles and she said that wasn’t endometriosis related, and that she’s not a leg doctor, she’s a reproductive system doctor so I should go to a leg doctor to have it checked. Another “huh?” moment! How can you supposedly be a gynaecologist who treats endometriosis patients and not know that abdominal endometriosis sometimes causes mild to severe leg or ankle pain? Yo! I decided I had had enough, so I stopped asking her any more questions or explaining my situation.
To proceed, she told me she was going to put me on Lupron (another hormonal drug) and that Lupron was going to shrink and kill off the endometriosis. People! I didn’t let this slide. I told her blankly that Lupron doesn’t cure endometriosis and that I react badly to such hormonal medications anyways so I don’t want it. Guess what? This woman accused me of not knowing much about endometriosis. She said she would give me antidepressants and other medications to help deal with the menopausal symptoms Lupron would give me. First of all, aunty! If hormonal medications cured endometriosis, there wouldn’t be thousands of women still suffering. These medications help manage the symptoms but they have no curative properties. In the end, I rejected the Lupron.
She then asked me to undress and lay down for an examination. I thought she was finally going to check me for endometriosis. Nope! She did a normal routine gynaecological checkup: cervix check, boobs and abdominal examination with her hands and she was done. As I was still recovering from all this, she left with her nurse and printed notes on endometriosis from WebMD for me, because you know, I don’t know about endometriosis.
I left the hospital ready to jump off a cliff. I had thought this was going to be the one breakthrough I had been seeking. I was finally going to see a specialist who was going to help me but it turned out to be just another error.
Onwards
As I write this, I am self-managing and still searching for a specialist in Ghana who can help me. I have the option to go to an endometriosis specialist hospital in the United States, but where is the money? I will keep you all updated on this journey. Maybe my next article on the subject will be an invitation to come pop a celebratory champagne for finally finding help. Cheers in advance!
Great piece but there is one thing many patients have to know, not all health workers are well informed … It is difficult to deal with the old folks who are health workers in Ghana because they always use their long years of being in the sector to bully people of they know much about the field. It is crippling our health system. It is one reason most of us young ones want to leave it for them because they make it difficult to cohabit with them at the hospital … .. I pray that your helper to get this specialist in the states is a second away from aiding you..