Endometriosis Stories - Page 38

United States

I started having heavy periods & bleeding as soon as my period started. For many years I just dealt with it and spent many days curled up in bed in agony when I would get my period. By the time I was 18 I started to get periods that would last for weeks on end.

I finally went to an OBGYN who suggested the LEEP procedure after a few abnormal pap smears came back. After the LEEP I was told I would bleed for a couple of weeks then go back to normal.

A year went on and I was still bleeding more than I was not. I was not getting my period but getting a few days off every month from my period. At this time I had tried many different oral contraceptives, each would work great for a few months then it would be back to the heavy bleeding and unbearable cramps.

Finally around the age 24 my dr suggested the depot provera shot. Sounded great to me if it could stop bleeding, so I went on that monthly shot. It worked miracles for about 2 years. I didn't bleed at all!

Then it started back up with the bleeding & cramps, and after much thought & consultation with my Dr, we decided to go off the depot shot for treatment and not take any kind of contraceptives or hormone pills at all for a few months to clear out my body and let it get back on its natural track. This was not so bad, after a few months I went back to having normal periods again, with minimal problems & normal bleeding.

Then out of nowhere it came back again- terrible pains, to where I was already being prescribed 10mg vicodin, which I was taking up to 5 times a day & still in agony. I had a laparoscopy and they discovered the endometriosis, removed most of the adhesions, there were some that were not able to be removed due to being on a major blood vessel, but I was advised I should be fine once healing from the surgery in a few weeks.

In a few weeks, I was still bleeding and having horrible cramps and the OBGYN I was seeing at the time basically said take Ibuprofen and use a heating pad. That was her answer. I was having such bad pain I would end up going to the ER because I felt like my uterus was in a vice grip being squeezed right out of my body. I would be given medication there and of course referred back to my OBGYN for further treatment.

I was not happy with the treatment options given to me by my OBGYN so I found a fertility specialist who worked a lot with endometriosis. He suggested I try the Lupron shot. I absolutely loved the fact that I had absolutely no bleeding at all, and my pain was not quite as bad so as far as I was concerned this was as good as it would get.

After being on the Lupron for several months the bleeding stayed away but the night sweats, hot flashes & mood swings were getting pretty bad. I was taking Estradol for the add back hormone to help with the hot flashes, but it did nothing to help with it. I don’t know why they are even called hot flashes as my blood boils around the clock.

I stayed on the lupron for a year as I was mainly concerned with the bleeding. After almost 15 years at this doing in my life being only 28, having bled more than not, I didn’t care what happened for side effects as long as I didn’t bleed.

The lupron treatment apparently is very expensive, and my insurance company couldn’t seem to get their stuff together, I had to call every month to a special pharmacy to have them ship my lupron shot to my dr, and after having this done for a year, all the sudden my insurance would not cover it any more.

They said I would have to pay the cost upfront and get reimbursed, which it is almost 800$ per shot!! I cannot afford to do that every single month, there is no way. So my dr advised we can try to do the depot provera oral pills which are not as strong, not as costly and the side effects would be less than what I had now, maybe a little bloated feeling- which I was fine with if it would stop my bleeding.

I have been on the 30 mg of the provera daily for about 3 weeks now and I have been bleeding so heavy & my symptoms are back at its worst. I don’t know if this is from the change in treatments.

My dr says it could be, but after all I have gone through with this over the years, I don’t know how long I am willing to try this with the bleeding like this. I feel like I am on an emotional roller coaster, I can’t control my emotions at all. I already suffer from depression & anxiety which I take cymbalta for. I don’t know what to do. Well thanks for letting me vent! 

Brandy Jimenez

I have had endometriosis since I was 15 years old and now I'm 33. It has been nothing but a nightmare! My husband and I finally had a beautiful baby girl who is now 9, but it took a while to get there. The joy was short lived due to the endometriosis. It was worse than it had ever been.

1 year after I had Destiny my doctor and I decided that a partial hysterectomy would be the best way to go for my situation. Over the years before the surgery nothing had ever relieved any of my pain. I couldn’t go on long walks, I couldn't do sports, I couldn't play with my child like I wanted to because of the pain.

After my surgery I was finally pain free and this lasted about a year...then it all came back and with a vengeance. I honestly don't know what to do any more. I'm taking meds everyday and it really does not help. I live in Alaska so my options are limited. 

United States

Hi, Today is January 26, 2011. I started having bad pelvic pain during periods since I started having them at 12 years of age but didn't know it wasn't normal until I finally got diagnosed with Endometriosis during my first surgery. I have had a Laparoscopic removal of Endometrioma surgery twice before.

The first in 1999 which was when they diagnosed me and the second in 2004. The second time it helped for several years. I'm about to have surgery again on Feb. 28, 2011 and the doctors are now advising me to take out my uterus because they say the uterus is the source of the Endometriosis.

Also, I have a strong history of cancer in my family. So I got tested for the cancer gene which came out negative, (thank God). Since my genetic testing for cancer genes results were negative, they say I can leave in my ovaries if the cysts are easy enough to remove off of them (which I am glad because I don't want to have to take hormone replacements!) I have one cyst on each ovary, (two total) and Endometriosis.

I'm 47 years old and going to get married on April 30, 2011. The symptoms of Endometriosis have gotten worse in the last 5 months or so and I'm really sick and tired of them. I have always dreamed of having children, but my fiancé doesn't want to have kids because #1 he doesn't think this world is good enough to bring in any kids and #2 he works for and lives,(he owns a home) in a retirement community that doesn't allow kids.

I have accepted his decision even though I'm sad about it because I would rather have a husband with no child than to have a child with no husband or a bad husband, and he really is a great guy!

My symptoms are: tummy aches, head aches, lower back aches, leg pain and pains all over my body, weakness in the legs, bloating, sometimes a low grade fever, sometimes constipation and sometimes Diarrhoea and an overall weakness.

Sometimes the 600mg of Ibuprophen doesn't even help, plus I hate taking pills. I need advice on whether or not I should consent to taking out my uterus or just to take out the cysts and scrape out the Endometriosis.

As the time gets closer and closer to the surgery date, I'm getting more nervous and stressed since not only do I need to make this decision, but I also have the wedding plans to think about! 

Taylor Wood
United States

Hi Ladies, I'm only seventeen years old, and after two surgeries, I was finally diagnosed with Endometriosis today. I started my period at age eleven, and my symptoms just progressively became worse as the years went by.

Since the symptoms of Endometriosis often "don't add up", I was told by my GI doctor that "sometimes symptoms like this just happen, we don't know why, and you're going to have to deal with it". I knew in my heart that something was seriously wrong with me. My symptoms may "not add up", but they were definitely happening.

This GI doctor performed a Endoscope and a Colonoscopy, but found nothing abnormal. Someone suggested Endometriosis, so I researched the disease and saw an OB/GYN as soon as possible. After my visit today, I was told that I do in fact have this disease.

I was told that it's not impossible for me to become pregnant, but it will definitely be difficult in the future. This was a little heartbreaking, because I would love to be a mother one day. But after reading many of your stories, I have hope that one day it will happen! I am going to be taking birth control pills to lessen my symptoms.

I am just so relieved that I was finally diagnosed after a year of searching for answers. I had no support from a lot of people, I was often told that it was "just in my head", and to ignore the symptoms. I know you all know that you can't just ignore the symptoms of Endometriosis!

Thank you for reading my story, I'm here to support any of you, and answer any questions! It's good to know that I'm not alone in this, because as a seventeen year-old, I can't relate to any of my friends with this disease. Thank you! Taylor 

Stories Page 39