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Thursday, October 7, 2010

Since I was a teen I've experienced painful menstruation. I started my period when I was 11. I went to the doctor for it at age 15 and was given a prescription for a mild narcotic.

Now I'm 52 years old and was just diagnosed with endometriosis 4 weeks ago tomorrow. I had classic symptoms. I also developed Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, an irritable bladder,adult allergies, adult asthma, and more. I had three of the best docs in my large city over the past 20 years and my complaints about pain weren't dismissed, but were definitely misinterpreted. I believe that they were often misinterpreted because I did not experienced infertility. I have three beautiful grown children to prove it. I also am the grandmother of six. I am SO blessed.

About 6 months ago, at a routine GYN visit, my new doctor suggested that I have an ultrasound. She didn't expect to find anything, but she wanted to cover her bases because I was having some unusual bleeding (as unusual as peri-menopausal bleeding can be). The ultrasound showed a medium sized complex cyst on my right ovary (just 3 cm), but my uterus was normal. She suggested that we do another ultrasound in a couple of months. In the mean time I was having right sided hip pain that I had grown sick of. I had an MRI of the hip and they also saw the cyst. It had grown to 4.5 cm. in less than two weeks. My second ultrasound a few weeks later showed that the cyst was fairly stable but smaller at 3.5 cm. (I'd had mysterious stabbing pains that made me think it was leaking fluid between those two visits.) A third described it as "septated" and still about the same size. Unfortunately a smaller cyst on my left ovary had grown a bit and had a new "sister" cyst (oh yay). During those months I was even more fatigued than usual for the week before and during my period. My pain reached a new height during an 11 day road trip. By the end I couldn't even drive the car. I was nauseated and exhausted to boot.

I finally consulted to a laparoscopy to remove the larger cyst and to figure out what was going on in my pelvis. I also consulted to the scary and somewhat unreliable CA-125 blood screening for ovarian cancer. I'm happy to report that mine was negative! When I came out the OR from my surgery, my doctor, who is not a particularly empathetic person, said, "You must be a very brave lady." I was anxious to hear her report, but then disappointed with the telling. She was unable to remove the cysts, which were all endometriomas, due to the extensive endometriosis that was found behind my uterus. She was encouraged when she entered the abdomen because everything looked great until she looked behind the uterus. My ovaries and tubes were adhered to the posterior side with complex adhesions. She couldn't lift the ovaries out of the cul-de-sac to do the removal. Her only option was to stop the procedure or to switch to a laparotomy and she felt the risk was too great because she believed it would have taken hours to sort it all out.

Her recommendation for me is a complete hysterectomy. I don't agree with her, but I will hear her out tomorrow at my post-op appointment. In the mean time I have started transdermal natural progesterone daily to try to oppose my estrogen (which is already so low that I'm near menopause estrogen levels). I have more questions than answers and am considering getting a second opinion from Dr. David Redwine in Bend, Oregon. I'd like to see the diseased tissue removed, the adhesions removed, and the right ovary (if not both) preserved. I'd like to keep my uterus as I believe it's the key to pelvic support for my future. (And God knows my bladder could use it.)

Until my next post please keep the path to the refrigerator freezer compartment clear because you don't want to get between me and my hot flash relief.


7 comments:

  1. Been there, done that about 15 years ago.

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  2. Susan, did you have endometriosis too?

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  3. Yes, I did. I never experienced pain or bloating but just super heavy bleeding. I had a hysterectomy but they left one ovary intact. In hindsight, I wish they had taken both ovaries. The ovary never worked again after surgery so I ended up on hormones anyway and after a trial of several hormones, I gave them up and went through menopause without hormones. My poor nurse practitioner must have hated to see my name on her schedule. It was a very uncomfortable time for me for about 6 months because I had no idea I had been thrown into menopause and it took us a while to figure it out. Then, the hormones had some sides effects that were unbearable to me (swollen, sore breasts and the estrotest made me feel angry all the time). The problem with having one ovary remaining is that I am still eligible for ovarian cancer. How crazy is that??? Having said all of that, I did the same thing you are doing ~ I researched every book I could get my hands on regarding menopause. I didn't question the hysterectomy because they didn't know if I had cancer or not until they did the surgery so I just wanted it out. The real rub came afterward because I was not prepared for menopause, I hardly even knew what it meant at age 35. It's still a very taboo subject in our culture which is crazy because all women will experience it if they live long enough. For what it's worth, I think you are doing the right thing getting a second opinion and asking lots of questions. Beyond going through menopause, I developed a weaker bladder which was explained to me that this happens because my hysterectomy was done through my abdomen and basically they opened me up, pulled everything out to surgically remove some parts and then shoved everything back in. If you think about it, something is going to suffer through that kind of handling. My bladder has never been the same. I don't share this to frighten anyone, I only share it because a person needs to know what to expect. I've talked to dozens of women who have had wonderful experiences with hysterectomies and they were glad they did it. I can't say I'm glad I had it but I sure couldn't have lived with not knowing if any of the endometriosis was cancerous or not.

    I'd glad you're posting your journey. It will be helpful to others, no doubt.

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  4. Oh my gosh ... I just tried to post a comment and it says it was too large and erased it. Darn! Yes, I did have endometriosis. They didn't know if I had cancer until they went into to remove it. Luckily I did not have cancer. They left one ovary which never worked again after surgery. If I could do it over, I would have told them to take that ovary as now I'm still eligible for ovarian cancer. Nice, huh? I took hormones for awhile and decided the menopause symptoms were more bearable than the side effects of the hormones and the risk of breast cancer from the hormones. Ay yi yi ...

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  5. I also have to say my bladder has never been the same after the hysterectomy. Mine was done thru my abdomen and basically they make an incision, pull everything out and then shove it all back in. The bladder takes a beating! I'm glad you are writing about it ~ it will likely be helpful for the next woman who is experiencing the same thing. Keep us posted, Lori!

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  6. Susan,

    Thanks so much for sharing your story here. I really appreciate it. One of my exact concerns about hysterectomy is that it tends to cause the bladder to prolapse. It can also cause vaginal vault prolapse. Since I also have symptoms of a rectocele (compliments of my first vaginal birth) I worry that I'll be a likely candidate for both because I also have mild bladder prolapse already so I hate to mess things up any more than they already are! I'm so sorry for everything you went through. Maybe I should have titled my blog "Trying to Keep My Parts." That is my ultimate goal, but then again I'm not too thrilled with living in pain either. LOL! Thanks for reading and sharing. <3

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  7. P.S. I'm secretly glad that you got to keep that ovary. Maybe, just maybe, it's helping you just a bit. They have found that the ovaries continue to produce hormones that are converted to estrogen elsewhere in the body into our old age! We aren't really "done" with them until we die. Hopefully you'll never have to face ovarian cancer.

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