Endometriosis Stories - Page 38

United States
Jan 2011

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
Jan 2011

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
Jan 2011

A positive story of healing/remission and pregnancy from Kara which reflects the advice here at Endo Resolved 
Combination: Detox, exercise, herbs & diet change! It took me a long time to find out what was causing me so much pain. I had had many doctors tell me it was "all in my head" and I finally went online to find answers and decided from my symptoms I probably had endometriosis. Laparoscopy confirmed it Jan of 2008. I felt pretty hopeless as supposedly there was no cure and hormonal treatments caused terrible side effects. When I had had enough of Western medicine I went back to trying alternatives.

I started with the diet and the herb pao de arco (a fungicide) then introduced probiotics after 1 month. My yeast problems have never returned. Then I started using a sauna and taking Spirulina (spirulina can spead up the detoxing for dioxins) to further detox, when I felt a little better, I began to walk, then jog, and did yoga with an Iyengar teacher who could help me with my condition. I went vegan (milk is especially bad for me!) and cook completely from scratch (otherwise there is too much salt for my bloating!). I bought a capsule maker and started a mix of cramp bark and valerian root capsules for my constant 24/7 cramping.

I heard about a small study on Maritime Pine Bark and began taking 2 capsules a day--this is a wonder herb!! I cut out any parabens in my toiletries. Then I added to this almost daily intake of berries (or other anti-inflammatory fruit), olive oil for cooking almost exclusively, plus flax seed oil in my oatmeal etc. I also found out that yerba mate helped a ton with my allergies (also a side-problem associated. with endo...) and drank that 2X a week to keep my sinuses less swollen and my bloating from endometriosis down, plus a ton of water each day!!

Was feeling a ton better and was back to doing pretty much all my normal activities by Jan. of 2009! I couldn't believe it, after only 1 year!! Decided to get pregnant and I did after only 1 month of trying! Now in remission. If I can do it, you can too! There really is nothing more precious than a healthy body! 

United States
Jan 2011

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
Jan 2011

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 

Trisha White
Feb 2011

My symptoms and heavy menstrual cycles began when I was 13 years old. I went to the nurse’s office every day doubled over in agony. I began trying to get pregnant at the age of 20. After one year of no success, I did some research to find a infertility specialist. The specialist was excellent; he was the first to diagnose me with endometriosis. The doctor wanted me to have laparoscopy surgery to have it removed, then proceed to IVF but I had no insurance at the time.

At the age of 27, I came back to see the same doctor and this time went through with the surgery. The doctor said the endometriosis did not affect my liver, bladder, or kidney. One of my tubes was irreparable so I gave the the doctor permission to remove it. The surgery was only a month ago. I am hopeful and prayerful everything will be all right. I know one day I will be pregnant but in God's timing not mine. After the surgery, I have had no abnormal pain just a little pain from my body trying to completely heal from the surgery. I am planning on going through IVF next month. My advise to any women living with endometriosis...Stay prayerful, find a good doctor that specializes in endometriosis and get the laparoscopy surgery done, and most importantly don't give up hope.

If you are in a relationship and your partner can not understand your condition, drop him he could be hindering you from your blessing. I wish everyone the best of luck. I will keep you in my prayers and pray you achieve your pregnancy goals soon. Keep the faith. 

Feb 2011

Hi, Im only 15 and for the past year I have had really bad cramps in my abdominal area and lower back. I didn’t take much notice of it at first thinking it was just normal with your period. But then, the problem got worse, and would stick around throughout my whole cycle, every day of the month I was in agony. It was in my lower and upper stomach. I went to the doctors with chest pain, and they did some tests but sent me away, and told me to come back if it continued.

A few months later I was back in there with pain in my chest and whole abdominal area, they did more tests and again sent me away with the same instructions. It was my graduation day for year 10, and straight after the ceremony I was taken to hospital as the pain was so bad I couldn’t do anything. More tests were done in ER and they sent me away with some medication. I ended up going back to the doctors, 8 months after the original visit and she sent me for a few ultrasounds and xrays.

The results came back I had two hypoechoic lesions outside my right ovary. My GP sent me to the gyno and he told me the cysts were actually inside my ovary, he pointed out I was very young to have endometriosis but I did in fact have it. Apparently in the more severe forms of endometriosis cysts are formed, usually they are all under 2cm in diameter, my 2 cysts were inside the one ovary, one measuring 5cm, the other 2cm. I was pretty scared going to see the gynaecologist, but now I need a laparoscopy to remove the cysts and check to see where else there is endometriosis.

I'd never heard of this disease before, but it’s good to see other people going through the same thing. Thank you ! 

Nicole Skinner
United Kingdom
Feb 2011

Well. Here I go? i started my menstrual cycle when I was 11. At first it started off quite normal. But then the cramps grew very severe. I was actually admitted to the hospital because I was in so much distress. I was on my period at the time but they thought I had appendicitis. The hospital sent me home with painkillers but they didn’t get a gynaecologist involved. I was then admitted to the hospital again due to a suspected blood clot in my lung. I had just come off my period at the time. A doctor actually came and noticed I was having trouble with my periods and sent me to see a gynaecologist.

I had numerous appointments with the gynaecologist. He ordered 1 ultrasound and 1 blood test. After the bloods and scan came back fine, he said he couldn’t do anything else. I can’t have most hormonal treatments because of the suspected blood clot and because I suffer from complicated migraines. We asked the doctor if I could have endometriosis and he said he didn’t think it was anything like that. Since then, it has grown progressively worse.

When I get the pain, I cannot stand without screaming and doubling over. I have to walk bent over because it is that bad. I try to exercise but it is just to agonising. I’m also on numerous medications. Some do help but they take a very long time to work. I’ve since been admitted to the hospital with severe abdominal cramps. It was because I had very severe constipation, which I believe is a symptom of endometriosis.

On the day of my discharge, I started my period and within 2 hours I was screaming the ward down. The doctor actually saw me like this yet he still discharged me. Then! after about a week, after my period finished. The abdominal pain returned, resulting in me going to the emergency department. I saw a stomach surgeon, but he refused to treat me because he thought it was down to my gynaecological problems.

I have many symptoms. Very very severe pelvic and lower back pain, constipation, severe migraine headaches, Very very heavy bleeding, clots, Sometimes i get pain during urinating ,painful bowel movements sometimes with blood, Extreme tiredness ,extreme nausea. I please hope someone can help me. I’ve been suffering for a long time for such a young person. Although i know some women suffer for longer. 

Brandi Quinn-Lawson
United States
Feb 2011

I am 37 years old. I started my period when I was 10 at 11 I started having very heavy periods. Then I ended up having to be rushed to surgery they said my appendix ruptured but it was a cyst. My periods just kept getting worse between 11 yrs and 13 yrs old I had 4 laparoscopy surgeries and was told there wasn't anything wrong.

Finally at 13 and my 5th laparoscopy they found endometriosis. My Dr. said he didn't understand why from 10 when I started my periods and 13 how the endometriosis could be so severe, I was almost stage 3. He said that the other doctors didn't find it because they weren't looking for it in an 11 yr old child. This was in 1986. All together I've had about 25 surgeries, they would go in every 6-9 months to remove endometriosis right after I turned 14 I had a laparoscopy and he said my uterus and ovaries were wall papered with endometriosis and said I was now in stage 4. Within a few months I was in severe pain again.

He then put me on lupron which was not approved for women between 1987 and 1997 I was put on about 8 treatments of lupron, the shortest 6 months, longest over a year long. It has been really hard between endometriosis and the side effects of lupron ( which my last treatment was in 97 and I still have problems with the side effects.) I've always tried not to let it stop me from living my life which isn't always possible, but I do my best. I was reading other posts and I am glad to see there are more options now. I really didn't have many options. Being in pain for 26 years takes it's toll, and on a positive note I was able to have a baby, I have a great 13 year old son. I wish the best for all and will keep everyone in my prayers. Brandi 

Sayra Dunham 
United States
Feb 2011

Okay, I am just wondering if anyone had the same symptoms as me, To start out with I have had mild symptoms for about 3 years (left side cramping ) after an ultrasounds it was determined I have ovarian cyst and always put on birth control pills to try to make cyst dissolve. Anyways now, I have terrible (in bed with heat pad) symptoms about 2 weeks a month, horrible pelvic pain, cramping and a bit of constipation. I honestly just want to lay down and cry, and about 7 months ago I started having severe shooting pains down my legs almost constant. I have been to Dr. on several occasions and she says sounds like Endometriosis, but I have no Insurance, so surgery is not really a likely option for me right now.

I guess my biggest concern is when I am on my period (I have normal periods) I do not have any symptoms at all, so I really don’t understand that one. Just wondering if anyone is having theses same symptoms and If it sounds like Endometriosis. 

United States
Feb 2011

I am 21 years old and I was surgically diagnosed with Endometriosis January 2009. When I was 15 I was rushed to the hospital, with a ruptured cyst on my right ovary. I thought I would be fine after that, aside from heavy periods and excruciating cramps. In November 2008, I realized I was having pains at different times. So I decided to go to an OB/GYN since I was 18 and could seek medical attention on my own now. So I was given birth control pills. A month later I had a follow up and I was given two options. A Laparoscopy or shots. My aunt had just started the Depo Provera shots and was having a horrible time so I opted for the surgery.

On January 9th, 2009 I underwent surgery. This is when I was actually diagnosed with endometriosis. They did an ablation and I was sent home. I was fine for 2 weeks and then the pain started up again. So I went back to the OB and he wouldn't listen to me any more. So I chose a new doctor. I went to the new OB and he strongly recommended Depo Lupron. So I hesitantly agreed. Once a month from February to August 2009 I went in and got a shot. The side effects were horrible. I was sick all the time. I started to lose my hair and get discoloration of the skin. I was extremely depressed.

The last week of August I had a follow up appointment and I was still in pain, so he suggested another surgery. So on September 10th 2009 I had my second surgery due to endometriosis. They said that somehow it had gone from stage 1 to a Severe 2 or Mild 3. I had complications with this surgery and ended up staying in the hospital for a day. After this surgery, I was put on NuvaRing. I was on it for 2 months and then had to come off it wasn't helping. I was then put on Loestrin 24Fe in late November 2009. I started bleeding around that time and bled for 70 days. Then I started Nordette in late January 2010. I seemed ok on the Nordette. I thought to myself "Finally, after 7 hormones I found one that works." I was wrong.

Towards the end of September 2010, I was in pain again. the Ob did a transvaginal ultrasound and discovered that my uterus was nearly twice the size it should be for a 21 year old who has not had children and is not sexually active. Since I was in pain, the OB decided to go in again. On October 25th 2010, I underwent my third surgery in 2 years. I had complications which lead me to be in the ICU for 2 days. They had found that there was endometriosis there. Since then, the journey is still going. I bled from October 28th 2010 to January 18th 2011 (non-stop). I was put on two birth controls to control the bleeding. So now I was on LoEstrin 24Fe and Nordette. I was on the combo for about 2.5 months. I went in for another Transvaginal ultrasound and the OB said since the bleeding had stopped I could go back down to one.

He put me solely on LoEstrin 24Fe (yes the one that wasn't working), and two days after I went back down to one I was in horrible pains. I have missed work several times for it lately and I don't have another appointment til March 9th. The OB I currently have keeps pushing the idea of having a baby. They also say don't have sex it will make it worse and think Mirena would do great things for me. They will not do a hysterectomy due to my age. I love kids, I do not want a hysterectomy but I don't know what else to do at this point. I think I need a new doctor but I am terrified at what the next one will say.

This is affecting my entire life. All of my relationships whether platonic or romantic have gone down hill. There are people who look at me differently because I am abnormal. What 21 year old stays home all the time? I am not the person I was 2 or 3 years ago. I am 21 and I have endometriosis. 

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