Journey to diagnosis

From my first meeting with Dr. Do I knew I was in good hands, her bedside manner was amazing, I spent most of the appointment crying while she went through all my medical records with me. After going through my now lengthy history of issues she had a very big feeling that I had endometriosis, she was doing a lot of research on it and my symptoms lined up in some ways, but not in others. She wanted surgery to be the last option since in her research it wasn’t showing that it  helped. So I tried everything that was available, Lupron injections, other hormonal injections, Nerve blocks in my back, Anti-depressants, steroids, and narcotic medication. Nothing helped. This is when I was first introduced to Holistic Medicine, she recommended that I try castor oil heating packs, acupuncture and Chinese herbs. I had already put my body through so much, and the thought of trying something that wasn’t backed by Western Research scared me, so I only did the heating pads. Dr. Do respected my hesitation, and the next option was to have surgery, so we scheduled laparoscopic surgery. Laparoscopic surgery is when they go in through your belly button with a camera and make a second incision to extract anything, They pump your stomach with air to make room between your organs to see and search through the abdominal cavity. The results from the surgery were that I do have endometriosis, I had lesions all over my uterus and some large ones on my ovaries, My doctor carefully removed the lesions, and just like that we had a definite diagnosis, Endometriosis.

Post surgery was not all butterflies and fairytales, I woke up from surgery in just as much pain as I went in, except now I couldn’t even use the restroom since my stomach was pumped with air, and I had the most intense pain in my shoulder from where the air was migrating too. Recovering from surgery was not an easy battle, my pain was still daily, and the medications that were prescribed were not even taking the edge off. Even though I finally had a diagnosis, was still in excruciating pain, I was also becoming depressed. I really questioned why I bothered with surgery, except that now I knew what was going on with my body.

This is why Endometriosis is so frustrating, the pain is unbearable, and since we don’t look sick on the outside people just think we are making it up, or over exaggerating, or that we just want pain meds, and other people, especially men don’t understand it. It is hard to explain to other people all the emotions and pains we go through daily. A lot of doctors will just think you are a junkie wanting pain meds, or even worse that it is “all in my head”. Endometriosis not only affects the body physically, but it wreaks havoc emotionally. My best advice and what helped me the most was to confide in a good friend who didn’t judge me and just let them know that some days I have good days, and some days I’m faking that happy smile, but when I need to talk please just listen. I want to be happy and healthy, and live a life without flares and pain, but sometimes it just wasn’t possible. This was before all the amazing endometriosis forums where again there is no judgement, we are all just letting out our emotions to people who understand what we are going through because they have that pain too. These forums are also great to talk about the new protocols and new treatments that become available. I wish social media and forums were bigger when I was first going through this.

Due to the surgery not helping with my pain, again Dr. Do brought up a holistic approach because she did know that one day I did want to have children and wanted to preserve my uterus and ovaries from any more damage that endo could be doing to them. I was told at this point if I wanted to have children it was a 50/50 chance. I still was nervous of straying from modern medicine, but I also wasn’t ready to freeze my eggs or have a hysterectomy. This was the scariest conversation that I have ever had, I was not even 21 years old at the time, and single. I decided that I would take my chances with fertility, and not freeze my eggs or have a hysterectomy. We did do more rounds of Lupron, hormones, steroids, anti-depressants, and pain meds, nothing helped. At this point my doctor moved out of state and I was bounced around form OBGYN to OBYN. Most just wanted to keep retrying hormones, and pain meds, and then after some research on my own I decided to get off birth control, especially since my Husband and I knew we would want to try to start a family I wanted to detox my body from hormones before we started trying. At my next appointment, I let the new OBGYN know my history of endometriosis, my struggle, everything I went through and that I decided to go off birth control. Her response was shocking and so unprofessional, without even looking me in the eye she told me “If you go off birth control, your ovaries will explode and you will die” I don’t need to tell you what my exact response was but it included profanities as well as I will never come back to see you again. I mean really Bitch! After seeing that I’ve done every medication and treatment with no relief you can’t even talk to me about my decision, and by the way what was HELPING ME! I was so upset, this made me miss my first OBGYN so much, she would’ve talked me through my options, not just blurt out birth control is the only way you won’t die. Well guess what bitchy OBGYN, 3 years later I am still off birth control, my flares are under control and I am doing just wonderful! THANK YOU VERY MUCH!

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After that experience with another drug pushing doctor, I was ready to take my health into my own hands and find relief.

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