Endo and Me

Aloha,

I am 42 yrs old and live in Hawaii. I have endometriosis and it negatively affects the quality of my life.

I am pretty certain my endo is back, and with vengeance.

I had laparoscopy in 2002 (when I was 36) and at my doctor's recommendation took continuous BCPs for 12 months after my surgery. I went off the BCP's to allow myself one period and then started taking BCPs normally. After another year, I stopped taking BCPs altogether. Today, I wish I never stopped them.

Last Thursday and Friday I experienced many levels of pain, culminating last night at a party. I had to come home. I thought I would faint the pain was so intense.

Tomorrow (today is Sunday), I will call the OB/GYN office for an appointment for my annual pap and also request an ultrasound.

I am having trouble facing my denial that it came back and what I have to face now going forward. After all the drugs, invasive tests and pain I endured prior to being properly diagnosed the first time, I am extremely emotional about heading down this path once again.

I no longer have a 'job' (I'm self-employed) and haven't had insurance since 2003.

I can't afford insurance, but I am not a big fan of insurance companies anyway.

The symptoms started up about a year after stopping the BCPs. Each month got a bit more painful. One summer evening July 2007, we went to a Bon Festival temple service. I was already feeling some pain. While sitting in the temple, the pain shot from a Level 6 to a 12 (10 being highest) and I could barely get up to leave. I somehow made it to the car and lay down in the back. We drove home and within 20 minutes the pain was subsiding. The next day I searched the internet for possible answers.

What I found was really frustrating. First, that it was probably my endo returning. Second, that laparoscopy was the generally acceptable method of treatment. Third, the never ending reminder that I have no health insurance and will have to pay for whatever I decide.

At that time I had some savings, now I do not.

I looked into alternative therapies and came across discussions about using acupuncture as a treatment method. I had recently completed treatments for my lower back (L4-L5, L5-S1) and am grateful to my acupuncturist for his healing. I called him and set an appt. Because some of my symptoms emulated prolapse, he started treating for for that. He adjusted my treatments as necessary and by 2008 I was near symptom free!

I weaned off treatments down to once per month and then stopped last Sept. I would have continued, but the economy was already slowing down and money was getting tight. My savings was gone, but my back is no longer inhibiting me from exercise and being active.

After a couple of months of no treatments, my pain symptoms returned and have gotten stronger and stronger.

My current searches on the internet reveal 1,000s more resources and information than I found back in 2002. I am finding the recommended treatments for endometriosis are laparoscopic excision, hormonal drugs, pain meds and alternative options like acupuncture, homeopathy, nutritional modification and immune therapy.

I discussed these options with my acupuncturist. I told him my fear of hormone therapy, not having all my organs, invasive surgery, etc. He said that hormone therapy is not an absolute and many women don't take hormones after hysterectomy or menopause. He said the body can adjust, naturally. Since I do not want to become pregnant and I should be menopausal within 10 yrs anyway, he suggested that if I do have serious endo or worse, some kind of growth, that I might want to consider a hysterectomy. He also suggested I get an ultrasound when I have my pap. He wants to rule out the possibility of a tumor or any other type of growth. When I had an ultrasound in 2002, it showed possible endometriosis.

So, here I am. Tired, frustrated, scared, worried, and confused about what to do.

Now it is the end of the day. I am not in pain. Maybe I will swim in the ocean tomorrow, now that I'm feeling better.

Pain/Symptoms

• Heavy, painful pressure in my gut area


• Rumbling and painful gassiness from below my stomach, down through my intestines


• Painful and irregular bowel movements
• Ovarian pain upon sneezing


• Painful gas
• Abdominal pain when I need to urinate, but can't get to a restroom


• Abdominal tenderness
• Headache on the left frontal lobe a day or two before my period


• Occasional sharp dagger-like pain from my rectum, shooting upward into my body


• Shallow breath due to the abdominal pain


• Sharp cramping before and during my period


• Heavy flow during my period


• Irregular cycle (20-45 days)


• Tender scalp before my flow and during ovulation

I take liquid calcium with magnesium everyday to help regulate my BMs but even when I'm the most regular, the symptoms remain.

I do not take pain meds, over the counter or otherwise. I try to maintain a drug-free and holistic life.

I do find that laying on my side for 15-30 minutes sometimes relieves the pain, but when I sit up or stand up, the pain comes back within 15 minutes.