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If it's not Endometriosis than what is it?

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Old 06-18-2011, 08:53 AM   #1
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If it's not Endometriosis than what is it?

(Sorry this is a little long)
Hi there. I am a 26 yr old, never been pregnant. I have had menstural problems since I forst got my period at 10 yrs old. Inconsistant cycles, heavy bleeding, intense pain, nausea and vomiting, back and leg pain, migraines, as I got older pain with sex and bad cramping afterwards, and my menstrual pain was constant even when I wasn't on my period. When I was 17, I bleed heavly for almost a month straight, and my Dr. discovered I was anemic and finally referred me to a gyn. I had pelvis and t/v ultrasounds and was told I had a cyst on my left ovary. I was put in b/c (orthotricyclin) to help with the pain and to regulate my cycle. After 7-8 months, the pill made things worse. Shorter cycles, heavier bleeding, so I was swiched to Diane 35. This time my cycles went almost 60 days and the bleeding stayed the same. I moved out of the city and had trouble finding a new Dr., but did find a NP who perscribed Naproxen for the pain. It has never really completely worked, just dulled the pain to a tollerable level.
Two years ago, I noticed that I had this weird pulling/tearing sensation in my lower right pelvis, mostly when I stretched or coughed. Had ultrasound done, nothing there. The pain wasn't going away, and I started to have bowel issues. Constipation or diareha, no inbetween, and major stomach cramping. I had more ultrasounds (pelvis, and abdominal), nothing found.
Last year was a rough one. In March, my live in Father in law was diagnosed with Esophegeal Cancer (surgery and 18 weeks of chemo, all clear now), in June my maternal aunt was moved into palitive care due to Breast Cancer metastasized everywhere. (She was only 48 years old and passed away in Sept.) Then in November, my husband and I were in a car accident and he broke his back. (100% okay now after 2 surgerys) To say that I was stressed out is a little bit of an understatement, and I neglected myself ignoring symptoms.
Once thing started settling down this year, I started paying attention and knew that something was not right. Along with my ongoing bowel, stomach and pelvic issues, I was now having bladder issues. Always had to go, could not hold it without pain. If I felt the slightest urge to go, I had to do it right away. It never feels like I can empty my bladder completely. So off I go to the Dr.(finally got one) and sent for more ultrasounds, urine tests, bloodwork. Nothing found, no infections, still anemic, but all other levels okay. I had asked him about the CA125 due to my family history.(Grandmother, 3 Great Aunts (2 maternal, 1 paternal), Aunt - Breast Cancer, Great Grandmother, 2 Cousins - Ovarian Cancer.) He said I should do the genetic testing, but refused the CA125 as it is not a reliable test. He sent me to a GYN who decided to do a Laparoscopy, Hyteroscopy and D&C to check for Endo. This was all done this past Tuesday (I'm still sore) I wont know my results for sure until the 30th, but she did tell me that there was nothing there, except some fluid that she drained off, and sent for testing (I was still groggy so I don't know if it was in my abdomen or uterus) I am driving myself nuts wondering what is wrong with me. Can Ultrasound and Laps miss stuff? If there is no endo, why am I always in pain? What was the fluid from if I had no cysts?

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Old 07-25-2011, 05:51 PM   #2
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Re: If it's not Endometriosis than what is it?

Thank you for responding. I was told by my gyn that there was no endo found during the lap, and the fluid found had no pathological findings. I am at a complete loss. According to my dr., my next step is a gastro for colonoscopy and endoscopy

Old 07-26-2011, 11:40 AM   #3
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Re: If it's not Endometriosis than what is it?


I had endo and a radical hysterectomy and double oopherectomy. Both ovaries were removed at 32. From everything I have read endo is very easily missed because it is microscopic. Go to the Endometriosis Association web site. When I was first diagnosed I called their hotline and women with endo held a meeting with me so they could answer my questions and offer support. This was the best thing I had done in terms of making decisions about the disease. I cannot stress how important support is with his disease as most people chalk it up to hypochondria (at least those that I know). Also, I found out that taking estrogen after my hysterectomy was just going to promote the growth of endo on other organs. The endo is fed by estrogen and needs it to grow. Even after requesting my surgeon to not put an estrogen patch on me after surgery I woke up to find the patch firmly attached to my skin. Boy was I angry.

Good luck,

Old 08-26-2011, 04:18 AM   #4
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Re: If it's not Endometriosis than what is it?

You will want to ask your OB/GYN or see a urologist as it could be "IC" - interstitial cystitis which is also known as painful bladder syndrome. Fibromyalgia can also affect the pelvic region. Best of luck.

Old 08-26-2011, 06:38 AM   #5
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Re: If it's not Endometriosis than what is it?

Hi. Sorry to hear about all your pain. You told my story. I have endo & IC (both confirmed thru surgery/tests). I finally ended up with an Reproductive Endocrinologist, who was experienced with endo. I had other docs that told me what yours told you. I have had 8 surgeries due to endo--not fun! Get to someone who knows what they are talking about. Good luck! Jen

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