I Felt Abandoned by Healthcare- My Endometriosis Story
Updated: Sep 23, 2019
Oh how do I even begin…… I guess I will start at the beginning.
One beautiful day in the summer of 2007 I was out and about seeing my home health PT patients and was in the home of a sweet little 80 yr old couple. They were very anxious about the husband’s current health situation of COPD and I was in the process of helping calm some of their fears when I suddenly had a sharp pain in my lower right abdomen. It was so bad that I started sweating and felt lightheaded. Due to the already anxious situation, I did not want to add any further stress to this cute little couple. I asked if I could use the bathroom and grabbed my phone. EEK, what to do?
I had to lay on the floor with my feet up on the tub because I was going down fast, about to pass out. Thankfully I did not. I was able to call my boyfriend at the time, who happened to be a doctor, and asked him to come and get me and take me to the ER. I then gathered myself off of the floor and told the couple that I was not feeling well and needed to leave. I let the office know that I was heading to the ER. Once I was there and went through some testing, they found a cyst on my right ovary. I was given some meds and was told to see my Obgyn.
I saw my Ob/Gyn and he did find that I had fluid around my ovary that indicated a ruptured ovarian cyst. The plan was to see how things played out over the next few months. Unfortunately the cysts came on the right side every other month and he wanted to operate to see if I had endometriosis. Endo-mee-tri- what? I was not sure what that was and had to do some research, but it sounded really scary. Laparoscopic surgery is the only way to truly diagnose endometriosis. I am hoping that this changes in the future.
The surgery was scheduled and my doctor prepared me to possibly lose my right ovary because it looked unhealthy on ultrasound. At this time in my life, I wanted children very badly and this was very upsetting. The surgery went well and he was able to save my ovary, which I am sad to say is still producing cysts. He said it was completely scarred down to my abdominal wall and covered in scar tissue.
After surgery he came into the room discussing my surgery and then stated, “Now go out and get pregnant.” He was offering that this would cure the disease, which we now know is not true but was believed for a very long time. Here is the problem with this statement,it was stated to a single, 30 year old woman in which that was not a current option, hello pressure. I was already under the “self pressure” that I had because I am one of those that had my life timeline all planned out. In the meantime I was put on birth control to control symptoms.
Two years later my gallbladder started to fail due to the birth control pill I was on.I was having gallbladder attacks, extreme reflux and all over body aches. The BCP drug I was taking was in all of those class action lawsuit commercials soon after this happened to me. To be honest, I never felt well on the pill. I had been on it on and off since I was 18 years old. I had no other risk factors for gallbladder issues. I was lean and active, ate fairly healthy and was under 40. I tried to put the surgery off for about a year by stopping birth control, cutting out saturated fat, alcohol and anything that might trigger a gallbladder attack because, let me tell you, those are no joke!! Now off the birth control pill, my periods were incredibly painful, I was having fatigue issues and getting cyst type pains again.My gallbladder was also not working even with all the lifestyle changes. I called my surgeon and said “ I can’t take it anymore, is there anything else I can do to save my gallbladder.” He set me up for some more testing and my gallbladder function was basically non-existent. I talked to him some more and to my ob/gyn and asked if they could operate together since I had both issues and that way I could avoid multiple surgeries. They both agreed and it was scheduled.
The recovery from this surgery was much longer and I continued to have GI symptoms. I got worse instead of getting better. I returned to the surgeon and he sent me to a GI doctor. We tried some medications for reflux and a small change in diet to help the liver in its new role without the gallbladder. Again I got worse and worse. I had body aches from head to toe,my hair was falling out, and my hands were especially painful. This made my job as an orthopedic PT so difficult. I had to use paraffin throughout the day to make it through and I lived on ibuprofen. I still had painful reflux while taking two 40mg Nexium a day. Because of all of my joint aches and pains, I had all the testing for rheumatoid arthritis, lupus, etc. Waiting for those results was heart wrenching. But it was also heart wrenching to not have an answer. Was this a part of endometriosis. After about 8 months of testing and ruling out a ton of diagnoses, my GI doctor mentioned Celiac disease. I had never heard of this either, this was before gluten free was a thing. I looked it up online and I fit every single symptom. After more testing and a diagnosis I looked for ways to heal my body because there really was no other treatment other than to avoid gluten. Now I know how closely related these 2 diseases are and how cutting out gluten helps endo symptoms, I will address this in another blog to come.
This is when I began exploring how much food plays a role in disease management and prevention. I looked into complementary healthcare including, massage therapy, naturopathic medicine, supplementation, craniosacral therapy and acupuncture. I have tried a ton of things so reach out if you want to try something and aren't sure. I bet I have tried it, lol. My body started to heal over the next year. It takes a lot of time and trial and error to figure out what works for you. My endometriosis symptoms improved as well on the anti inflammatory diet.
Fast forward to 2014, I did great managing both until something in my life got a little hectic and busy and my diet fell off the wagon a little. I never ate anything with gluten on purpose but was less careful about cross contamination, eating out more and trying the new gluten free products that were processed foods. I also dabbled with a little more wine to manage stress and coffee to manage fatigue. During this time I was starting a business and making some big changes in my life. The symptoms of endo returned in a fierce way. I was having fatigue, brain fog, body aches, cysts and a new symptom of pain in my rectum and all things and projects came to a halt. I cannot even describe the pain in my rectum. It’s one of the worst pains I have ever had. I talked with my doctor who recommended I see and colorectal surgeon. He also recommended a drug called Lupron, which he had also offered after my surgery in 2010. I had researched this drug that was actually a chemo drug and had enormous side effects and did no cure endo at all but kinda put it on hold for a year or so. The side effects are such that you can’t take it for very long. It actually puts you into menopause, causes bone loss and all the fun things menopause brings.
You can understand my apprehension, right? Also my history with taking drugs that affect my hormones was not great. I saw the colorectal surgeon and everything checked out there and he agreed it was likely endometriosis. I again tried to avoid surgery. I cleaned up my diet, went to acupuncture, and tried to decrease stress as much as I could. These things did help but that fierce pain came every month during ovulation and sometimes just whenever it pleased. I talked to my doctor again and a surgery was scheduled.
Surgery Number 3- The surgery went well per the surgeon and he removed some lesions but said he had to leave some around some arteries because he would need a vascular surgeon to do that part of the surgery and the risk was too high. On my end, nothing changed. I still got cysts frequently, had the same rectal pain and bad periods. It seemed as though the surgery improved nothing and I was left with more scar tissue.
I tried birth control again as I was desperate but it did not help and gave me raging breast tenderness lasting 2 weeks out of every month and a scary mammogram situation. I had an oncology surgeon tell me to stay away from artificial hormones. I went off with life for a while, living on ibuprofen. Then again when life got stressful my body crashed and burned along with any energy. In my mind another surgery was not an option, hormones were not an option. And then my gyn of 18 years retired. I felt abandoned. Who could I find to replace this long term relationship. I was happy for him but scared for me.
I was passed on to a young and busy gynecologist that on my first visit rushed me through everything and ignored questions about my endo when I said I was not interested in the drugs mentioned earlier and rushed out to the room. This happened twice. I felt abandoned.
I started researching again and looked for other treatment options for myself to help manage my endo. I found out that there was a specialty in physical therapy for pelvic floor treatment. I am a PT as well, how did I not know about this? Now a growing field, it was rare to find more than a couple in major cities in the US. I also started networking with women’s groups in CHS because I was back to starting a business to help other Celiacs manage their symptoms. There I met a woman named Jessica Murnane. She was discussing a book she wrote called One Part Plant. She had discovered how much a plant based diet had helped her symptoms and created a cookbook. We chatted after her talk and she told me about her endo journey and some other resources. This opened a whole new world of options for me. I connected with pelvic PT’s across the country and started taking courses for how to treat this as a PT. It reignited my passion for being a PT that I had lost along the way. I could not learn enough and that journey continues.
I learned about excision surgery which cuts out the endometriosis instead of burning it off (ablation). I learned that this was now considered the gold standard of treatment for endo but that insurance was behind on covering this. Insurance pays the same amount for ablation and excision and the later takes longer time in the OR and more skill as a surgeon. Therefore, the surgeons who do it charge outside of insurance, which I can't blame them. I also found out that there are no surgeons in my city that perform this type of surgery. I searched and searched.
In 2018, I met with one doctor who was recommended by another MD I knew. I was told that he may do excision surgery. He had reviewed my records and obviously disagreed with how my disease had been managed, but didn’t want to come out and say it. He examined me and I almost crawled off the top of the table during the exam, in pain. After reviewing my chart, he told me I had endometriosis in places I had never been told. I had endometriosis around my ureter (the tube connecting the kidney to the bladder) and in the cul de sac between my rectum and uterus. I found out that they were actually stuck together. He said that if I had surgery again, I would likely have to be opened up and would lose my uterus. He said that I may end up with an ostomy because the rectum is often perforated during separation. He wavered on surgery vs no surgery and again offered me hormones. I honestly felt that he was annoyed that he had to see me and take on a complicated case. He also told me he used the ablation technique.
I had no idea what to do with this new information. Again, I felt abandoned.
I found out I would have to travel to Atlanta for surgery with a more skilled surgeon if I chose to go that route. The Center for Endometriosis was recommended by several pelvic PTs and in the FB group Nancy’s Nook. I found out this surgery and hospital stay would be an out of pocket expense.
I am telling this story because I know I am not alone.
I have heard these stories from my patients, and cried along with them. I have read them online. I have colleagues with similar stories. There is still so much to learn on how to manage endometriosis. This disease can be a beast and takes a multifaceted approach to manage it.
For me, I am still fighting the fight. I have kept on the path of taking courses to learn more about how to manage this disease. I have taken functional nutrition courses to hone in on foods that increase symptoms, to avoid. I learned about supplements specific for endometriosis. I took more pelvic PT courses and visceral mobilization courses which I have found to be very helpful.
To all of you Endo Warriors out there, hang in there! There is a powerful movement going on to push forward better management of this disease. The first Endometriosis Summit happened this year and was a great success. There is a petition to ACOG (American College of Gynecology) to change the way the surgery is billed so it is available to more women. Seek out a web of support from your local community and online. Take a multifaceted approach and use alternative and complementary treatment options. Know that you are not alone!
There is no one in my area that focuses on treating this disease and I hope to change that. I opened the doors to Elevated Physical Therapy earlier this year and am putting together an Endometriosis Support Group to get more info out there. I am looking to build a network of practitioners of many different specialties to join me. I felt abandoned by Healthcare and I am on a mission to make sure no one else feels that way!
If you are looking for more resources or want help navigating your path, reach out any time!