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Endometriosis

Endometriosis is one of the most common medical conditions affecting the lower abdomen (lower belly) in women. In endometriosis, the kind of tissue that normally lines the inside of the womb (endometrial tissue) also grows outside of it….It often takes years for endometriosis to be diagnosed as the cause of these problems. Until the diagnosis is made, many women try to cope with their pain somehow. They believe that the pain – even really bad pain – is a normal part of their menstrual period. There is currently no cure for endometriosis. (U.S. National Library of Medicine)

I’ve always had painful periods, but every time I mentioned it I was told it was a woman’s lot, every woman has pain with their period, and basically, to deal with it. So I always thought that every woman went through what I was going through. As I got older, things got worse. I often missed a day or two of work around my period. My GI symptoms were always a lot worse during that time. I remember going to my (ex) GYN and telling her, crying, that I couldn’t take it and felt like something was wrong. She was irritated with me and told me that I might have endometriosis, but that the only way to diagnose it (and fix the problem) was surgery, and that “I didn’t want to go down that road.” She also told me that having a child often helps (!). She really scared me so that I didn’t bring it up again. Needless to say, I found a new GYN after that.

I tried pretty much every variety of birth control, since a lot of birth control pills are recommended to help with painful periods, but I had trouble tolerating most of them – they worsened my mood problems, exacerbating my bipolar disorder. I also often had yeast and bacterial infections. In 2010 I tried an IUD (Interuterine Device), which is a uterine implant birth control. Having it inserted made me scream in pain, and within a week I was back at the doctor’s, doubled over in pain. An ultrasound showed I had an ovarian cyst that had burst. I switched to the Mirena IUD, but after a few months I couldn’t stand that either – cramping, pain all the time. I was diagnosed with Pelvic Floor Dysfunction. Then I tried Depo-Provera, which reduced me to a sobbing mess for a month, wild mood swings, it was miserable. So, in 2011, I had a tubal ligation, which eliminated the need for birth control, which was great. One problem down.

Of course, this didn’t eliminate the menstrual pain, which had gotten steadily worse over the years. I tried Pelvic Floor Physical therapy, which didn’t make much of a difference and I couldn’t afford long term. In the meantime, the rest of my health was deteriorating – my GI symptoms were escalating, I had to stop working, and I was finally diagnosed with Gastroparesis in October 2011. All the focus was on my GI problems, I was in and out of the hospital, trying different diets, etc. It was now at the point where the pain began two weeks before my period. I also had this excruciating pain in my left side that nobody could explain.

Let me take a minute to extoll the virtues of finding the right doctor. I was lucky enough to have an amazing resident assigned to my case under the GI doctor I was seeing. This resident was so empathetic and patient with me, and really went above and beyond. He had a theory that I had severe endometriosis which was compounding my GI problems. I also had an amazing GYN, who I still have – she deserves a medal, honestly, she’s so caring and personable and has tried so hard to help me. They worked together and we decided I needed to have surgery to see what was going on.

The surgery to diagnose endometriosis is laproscopic, meaning they make little cuts in your abdomen and look inside with a camera. The surgery took twice as long as they anticipated because the adhesions were so extensive. They cut out everything they found, scraping the peritoneum (inside of the abdominal cavity) so that it wouldn’t grow back. Apparently there are four types of adhesions and I had all of them. They also found that adhesions had twisted my colon, which was causing the intense pain in my left side and hadn’t been visible on any of the tests I’d had.

It was kind of a strange feeling, knowing that I had this disease, but also feeling so validated – I was right, something WAS wrong, and everything I’d been saying for years was true, but nobody had listened to me. This was one of the events that really taught me that as a patient, you have to really listen to your body and keep fighting until you get other people to listen too. Multiple doctors over the years had told me there was nothing wrong with me and to just deal with it, and they were wrong. I also had this weird vision of my abdominal cavity being filled with spiderwebs, but that’s beside the point.

Two years and a gastrojejunostomy later, however, and I was still in such severe pain that I was on painkillers. The pain began two weeks before my period, but I was also having random spikes of pain that lasted for a few days. My back, hips and pelvic floor were involved, even my upper legs. I was in ripping, debilitating pain much of the time. I was diagnosed with Adenomyosis – endometriosis in the uterine wall. Adenomyosis is an exclusionary diagnosis – if after surgery to remove adhesions the pain persists, it’s the logical conclusion. After much thought and research, I decided to have a partial hysterectomy (uterus and fallopian tubes removed – ovaries left). I met with a GYN surgeon, who impressed me so much. The first thing he did was to take my hands, look me in the eye, and tell me he was so sorry I had to live with this debilitating pain and that he was going to try his best to help me. If you’ve suffered through the pain and frustration of endometriosis, you’ll understand what it means to have someone validate your pain – it’s priceless.

I had the surgery. They found more adhesions hiding behind my uterus and more endometriosis in my uterine wall. The ripping, debilitating pain was now gone, but after I recovered from the surgery I realized I was in a different kind of pain. I now have chronic lower back pain, which often spreads to my upper back, hips and upper legs. All of this is made much worse by the feeding tube – it keeps me from straightening up, which of course makes me hunch and makes the lower back pain much worse. It keeps me from doing yoga or any kind of exercise that might have been able to help. I tried another, longer course of Pelvic Floor Physical Therapy, but to no avail.

I feel like every time I have surgery to fix one problem it does fix the problem, but it gives me another one. I’m in chronic pain, but I find it more manageable than before the two surgeries.