These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
by Brenda
(USA)
As many others have written, I had very painful periods as a teenager, but everyone said it was normal. I got married when I was 22, went on the pill immediately. Regular periods, no pain. Then, in my late 20's, hubby and I decided to try for a baby. Symptoms again, no pregnancies. Then hubby lost job, put kids on the back burner.
More and more agony and symptoms as I progressed through my 30's, and still no pregnancies. I resented going to fertility doctors, as I thought they take advantage of people and try to shove every drug known to man down your throat. Adoption was out for the time being, as both hubby and I have to work.
That to me is most depressing, even more so than the abdominal pain. I can't tell you how many times I've cried or gotten angry when I hear people going on and on about their kids or their grandkids, but I try to keep a stiff upper lip and try to be upbeat along with them. Later the pain in my abdomen was so bad I could barely drive to and from work. I kept it from my hubby because he was going thru a tough time himself, but it eventually caught up to me, with having to fashion a hot water bottle at work and popping ibuprofens and naproxens (NSAIDs)...except they weren't working any more.
I finally went to see a local family doctor, and the nurse practitioner (they aren't full-fledged nurses but have medical backgrounds and degrees) really listened and took an X-ray. Lo and behold, she found a mass on my bladder - no wonder I was going so often to the bathroom and hardly anything was coming out! It was scary, but I wanted to know what was going on.
Went to see a specialist (works with problems in the bladder, among other things), said I had to have surgery to see what the mass was and get it out of my bladder. First surgery I ever had - at age 39! Great hospital, and the nurses there raved (in a good way) about my doctor. Haven't had problems with my bladder since, thank goodness. The weird thing about this surgery was that I had to have a bag hooked into my urethra, to circumvent the bladder while it healed. It was like being an old Wild West gunslinger, with my holster (the bag) tied to my thigh! :-) But at least I could keep it out of sight.
Unfortunately, my pain free times didn't last, and I became stressful almost immediately. My gyno suggested another surgery when she took some ultrasounds and noticed a lot of crap in my abdomen. Laparoscopy wasn't going to cut it, no pun intended; the more severe laparotomy, where I was fully opened up, would have to be done.
But first, she sent me to a specialist to try to interest me in Lupron. After doing internet research, I decided against it, and told the specialist so. Not an easy thing for me, as I'm a pretty shy person, esp. in front of doctors (just dangle a medical degree in front of me and I'll usually clam up real fast!). Anyway, I dug in my heels and said no Lupron, for which I am thankful for to this day.
My gyno did the surgery 2 weeks before she was due to give birth, so she had another doctor with her to help out. Hubby later told me he wanted to rip out some stuff, but my gyno said I didn't want to do that. Thank goodness. And where did that doctor get off saying that anyway?
After the surgery, my gyno suggested going on the pill to take care of the pain. At first I didn't want to, but as I didn't see anything else out there at the time, I decided to try. Mistake. I decided to try the 3 months continuous pill taking (4 month is the period). This worked okay the first couple of times, then my mind went on the blink. In the middle of a sentence, if I didn't concentrate, I'd forget what I was talking about. I knew something was wrong, but I didn't know what. I was so depressed, but I kept looking.
One day I happened upon a website, one by a doctor named Dr. John Lee. He'd done a lot of research on endometriosis and trying to find natural cures (or at least, easements). He talked about natural progesterone, and the more research I did, the more I wanted to give it a try. I bought and downloaded his ebook on perimenopause.
Reading thru it, I happened upon something that made me sit up and take notice - he talked about the symptoms I was having at that very point in time! That the pill can mess up your mind (paraphrasing here). I found natural progesterone at a health food store near where I live, and I still use it to this day. Not exactly a cure, but it takes a bit of the edge off. Still having symptoms so I did more research. I came upon a site called Sensible Health (http://www.sensiblehealth.com).
The lady who owned the site (a chemist by training, I believe), had overcome her endometriosis. She claimed it was a combination of stress and liver congestion that was causing the pain.
So I tried her formulas, Coptis and Chinese Bitters. The Coptis I use at night on an empty stomach before going to bed. This has helped me sleep through the night. Chinese Bitters...has sort of helped. I still have symptoms, but this might be because I've taken so many NSAIDs over the years. But maybe it will work for someone else.
I'm now researching serrapeptase, which I just happened upon. It's an enzyme that sort of "eats" scar tissue. I'm willing to give it a try, as the pain continues (esp. after I've had my period). Thank goodness I continue to workout at home, with strength training, cardio, and yoga. Exercise has also taken the edge off a bit, and once I'm past a certain point in my cycle, I can have little to no pain in my abdomen.
Of course, I want to get to the point where I have negligible pain. If serrapeptase helps me to that goal, it will be worth any price. DON'T GIVE UP!! Namaste.