Why can't something be done about this disease?

by Christa

Here is my story of endometriosis ... I was on birth control for about 4-5 years. I went to the doctor to get a refill on birth control and my blood pressure was too high, so I was told I could no longer be on birth control.

That was about 5 years ago. As soon as I got off of bc, my periods changed. I was always pretty regular and had some pain during my period. After taking bc, I began only having a period every 4 months and it was very light for the most part.

Then last August, I started having some pain (not severe) on my left side, around my left ovary. In December, I noticed this pain seemed to be growing more severe. By January I started having regular periods again, but the pain symptoms on my left side were getting bad.

In February, I ended up in the ER due to excruciating pain, once again, on my lower left side around my ovary. It felt like someone was twisting my ovary and pulling it out of my body. The ER doctors ran an IV, did blood tests, an ultrasound, and a Cat-Scan.

They found nothing abnormal and I was told to see my OBGYN. The next day I was in his office and explained everything. He said my symptoms seemed like endometriosis and the only way to know was to do laparoscopic surgery. He also ordered another ultrasound at his office where nothing was found.

So, on Valentines Day, I went in for laparoscopic surgery. During surgery he found a small fibroid tumour, a larger fibroid tumour, and a few patches of endometriosis which he cauterized.

After surgery I felt great for about 2 1/2 weeks. I was never really diagnosed with endometriosis, but did ask the doctor what he though was causing the pain and he said endometriosis.

So in March around my period, the pain symptoms returned. I decided to get a new OBGYN, for many reasons, but I love him. In April the pain was more severe and happened a little before during and after my period.

In May I was in pain every day!!!! My doctor has since ran an MRI thinking it might have been something with nerves bc the pain runs down my thigh and into my butt at times. I have now had 3 ultrasounds, a Cat-Scan, a MRI, and laparoscopic surgery and I still have no answers.

My husband and I really want children so I do not want to have a hysterectomy. My doctor just started me on Aviane birth control for 6 mths to see if it will treat the pain symptoms. I have literally been in agony for the past 6 days! I take 600mg of ibuprofen and 7.5 hydrocodone every 6 hours to help with it.

My symptoms consist of pain only on the left. Sometimes it feels like a pull or a twist, a burning sensation, a sharp probing feeling, and a stretching pain. I do have some bowel symptoms because the pills make me constipated.

Other than some pain in my leg and butt, I don't have pain during sex or some of the other symptoms I've read about with endometriosis. Anyone that reads this, please feel free to comment and give me your thoughts.

Does this sound like endometriosis? Is the birth control/pain med going to help or make things worse? I HATE being on pain meds!!!Thanks so much. I just want my life back!!!

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Sep 10, 2016
by: Anonymous

I see an endometriosis specialist for my severe endometriosis pain. There are options to help you get pregnant and from most people I talk to in the waiting room pain subsides during pregnancy but usually returns after because the release of estrogen feeds it.

Depending on your severity I would try to get pregnant sooner than later if you can. I was diagnosed after my 3rd child and a prolapsed uterus where they found endometriosis. After 5 years in and out of hospital they made me think I was just being a baby until a laproscopy proved there was a problem. I hope you are able to get pregnant!

Nov 15, 2014
Have this, know why
by: Anonymous

I have severe endometriosis. I have same thing. Endometriosis in rectum will affect utero/sacral nerves, inflammation for monthly cycle causes pressure on these nerves, affecting sciatic nerve and cause pelvic muscles to spasm. It can even invade wall of rectum or grow on nerve roots as well.

Every month I get severe "butt pain" with my period, followed by two weeks of the exact same butt, thigh, sciatic pain. Literature that I've read on this says that eventually the scar tissue gets worse and the pain keeps lasting longer every month until it just stays all month.

I've had MRI, cat-scan and nothing showed, my doctor did not recognize this symptom as it is rare. Went to doctors to do pelvic massage, still no relief. When diagnosed with endometriosis I took lupron injections and pain went away.

Realized it is monthly cycling endo in rectum area around the sacral nerve complex. Gets very bad and has now caused bladder problems making me use a catheter, monthly. Also restricts bowels from emptying.

Going in next week to have ovaries removed instead of bowel resection, as my new surgeon who has dealt with this says there is high risk of permanent damage to nerves, bowels and bladder if bowels are re-sected. Everything is encased in thick scar. Big mess. Don't delay too long. Good luck. If addressed early enough, there are skilled surgeons that can remove it from cul de sac area and rectum.

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