Endometriosis Stories Page 23

Karla St Pierre 

I was diagnosed with Endometriosis (finally) approximately 5 years ago. At age 21 I had a partial hysterectomy done (uterus and tubes) they had left the ovaries so that I wouldn’t go through menopause.

They had told me that with the partial hysterectomy that it would cure all the pain and all the symptoms. What a surprise didn't help. 3 years later I ended up getting an ovary removed. Which once again they told me would relieve my pain. Well guess what? didn't work again!

At this point I was more than frustrated with the situation. I went back to the Dr for them to tell me that it was basically all in my head, here are some meds go home and rest. I went back fed up with the entire situation and told them that something needed to be done. So they took me in for a laparoscopy and told me that they had removed it and everything was going to be fine. Well Surprise..It didn't work.

Here I was going through this process yet again. However this time was a little different, not only was I suffering in pain with no offer of any help medically, but I was also slipping into depression. I was hurting in more ways than one. I went back to the Dr and told him that on top of the pain of the Endometriosis I was slipping into a depression, and that I was scared about how I was feeling.

Part of the depression had a lot to do with the disease but it also had a lot to do with feeling like less of a woman due to the hysterectomy. But it also had to do with suffering and having no help medically what so ever. So here I am today with just recently having my 8th surgery for endometriosis.

There are no support groups, specialists or nothing in Canada to offer any help of any kind. I have lost jobs, time off work, and have been robbed not only of my female parts but robbed from enjoying life with my family.

I have now made it my mission to do everything and anything that I can to make more awareness in Canada as well as doing everything I can to set up some means of support.

Since my 8th surgery I am once again back at square one and am currently seeking out an Endometriosis specialist. By the looks of things I am going out of country to do this and I think that this is ridiculous. There should be more services. Government grants ( for loss of income), Support as well as specialists that specialize in only this..

My hat is off to all of you going through this horrendous disease. I wish nothing but the best to all of you. And if I can be of any support to anyone please do not hesitate to email me. I am more than willing to listen and offer a shoulder of support. 

Allison Baxter 
United State

Since I became of menstruating age at 12, I've always suffered from heavy and irregular periods. I was relatively pain free and generally had no problems associated with menses until about 17. My immune system took a big crash during that time and I suffered from many illnesses at once. Bacterial infections, gallbladder attacks, jaundice, and multiple colds and flues. I was hospitalized twice with the gallbladder and had it removed.

During this time, I suffered from agonizing stomach problems and after my gallbladder removal I never got better. As I progressed further along the years, I always chalked up my constant discomfort to issues from my gallbladder/GI problems. See, I was never really in major pain but I was constantly having to deal with IBS symptoms, nausea, bloating, ect.

It finally began to get worse and I started going through Gastrointestinal Doctors, going through GI testing, and of course, coming up empty with results or any diagnosis.

I was told to try specific diets, go through allergy testing, and tried multiple medications for GI related disorders with no effectiveness (of course) and was, by my last GI, told that I was crazy. By this time I was begging for them (my GI office) to look on the outside of my bowel as opposed to the inside and they wouldn?t listen. I just knew my problems were on the outside. I finally, after doing some research and paying attention to my own body, went to the Gynecologist.

By this time the agony was getting worse and worse every month. My periods were unusually long, the blood a blackish brown (which I called old blood). My life was basically revolved around my menstrual cycle and I would feel ?good? only about one week of the month if I was lucky. I was sick all the time.

So to the Doctor I went and after my ultrasound, I was given a laparoscopy to confirm what I already suspected. Stage 4. The endometriosis was attached all over the ligament of my uterus and my uterus is completely deviated to the right side of my body.

I had many implants in the Pouch of Douglas, on the outside of my uterus, bowels, colon, and muscle tissue. Unfortunately my surgeon could not laser most of my implants. She said many of mine are deeply implanted in my tissue and removal was impossible.

From there I went to Depo Lupron. Now, my painful symptoms were never completely removed and I was still having problems but they were less severe and I was able to go on with life.

Depo Lupron was used as treatment and helped move my uterus back to a more central position, but you can only take it for 6 months. I had side effects but generally went unscathed through the whole Lupron regiment.

From there I went to Seasonique which made me so crazy, evil, nasty, and mean that I couldn't take it any more. I'm on YAz now, but all regular BC does is make sure to keep the bleeding controlled.

It has been just a year since my surgery and I called my Doctor's office just a few minutes ago because I am back to living my life in agony. More surgery, I bet. I just want this over with, but there's no answer and no cure. The depression that comes with such hopelessness is beginning to get to me to.

I'm glad that I am not alone in this, but I wish I was and that no one else had to suffer as we suffer. The reason why I'm posting this story is so that other women going through prominent GI symptoms should get checked out by a GYN who is familiar with Endometriosis. Get checked, speak up, and be aware! Bless you all. 

United States

I am writing this because words cannot express the love and the respect that I have for Dr. Masahide Kanayama (an endometriosis specialist in new York). My story is long and painful, i was at the bottom .. I have literally given up all hope when I was sitting at starbucks of all places and was listened to some women talk about her newborn and what a miracle and blessing. I have been desperate for a child for years so I decided to be bold and ask her since I have had 5 failed IVF treatments.

She then proceeded to discuss her endometriosis and since I have never been diagnosed I automatically knew that the symptoms I have been experiencing were the same.I finally contacted the office and was greeted by a vey compassionate women named sabrina who listened and understood. She gave me an appt right away.

Within the first visit I was diagnosed with Stage IV endometriosis with my uterus being pulled to the left. I was scheduled for surgery almost immediately. All of this came as a great shock to me and was a little overwhelming.

I had a lot of anger towards the IVF center knowing I had endometriosis and continuing to take my money without notifying me that the chances of getting pregnant where lower, and the chances of holding on to the pregnancy was lower than that.

I decided to go ahead with the surgery, I am not 6 months post op and 3 months pregnant naturally... Thanks to Dr. Masahide Kanayama and his amazing team. God Blessssss 

South Africa

Hi Ladies I have been to my gynae who recommended I take the zoladex injection for 3 months, has anyone been on that injection? I am going for a second opinion next week but need to know if anyone can give me some advice on it. I have had endometriosis from the age of 23, now I am 30yrs old.

I want to have kids but dr says I need the injection. I have a stage 4 endometriosis, my periods aren't as painful as before and the pain only lasts for 1 day, and it's manageable. Intercourse is painful at times as well. I have only recently gotten married, Nov 08 and saddled with so my problems. 

United States

I was 26 and just married when I started getting clearly ill. I had extreme bowel problems and abdominal cramps. They became so bad that I had to quit work and school. Every time I ate any food at all I would have abdominal pains.

I went to many doctors and had many tests done. They came back and told me it was my gal bladder that must be the problem. In my hurry for some kind of relief I signed away a part of my body and had it removed.

After the surgery healing I was not better. I went to more and more doctors and FINALLY I found an OBGYN doctor that subjected Endometriosis. I had the Laparoscopy procedure done and they found Endometriosis all over my insides.

On my bladder, outside my womb and possibly in my bowels. He zapped the ones he could and then told me the only way to get rid of the problem was to take hormones, they simulated menopause, or to have a complete hysterectomy, ovaries and all.

I have read so much about this and I can not see how a complete hysterectomy can help. If you have to take estrogen pills, then what is the difference from that and the ovaries being there? So I have been trying many different lifestyle changes and I have not found any that have lasted very long.

Fatigue and bowel issues would come back as strong as ever. It has now been two years since I have been diagnosed with Endometriosis and I am ready to give up hope and have it all taken out just on the off chance I might find peace that way. I am barely human as I am now, and not even able to contribute to my family.

I am 29 turning 30 this year and I have lost so many years to this. I was strong in the beginning but now I feel lost in a depression with every disappointing attempt to feel better. I found this site while I was browsing this evening. I was looking into having the surgery and wanted to hear from other real people like myself. Maybe I can find a new direction. This is my story. Stephie 

Amrit Matharoo 

I am 32 years old. I was diagnosed with Endometriosis in April 2007 when I had my first laparoscopy surgery. I was on infertility treatment for last 2 years. My Dr. did all the tests but he didn't find anything wrong with me or my husband.

Seven/eight months before my surgery I had a lot of pain in my lower abdominal and had a lot of bleeding during periods. I had pain during intercourse, washroom and ovulation times. I never thought that I am a sufferer with a disease.

After my surgery I found that I have Endometriosis and my right tube is more affected than the left side. My Dr. said that your case {condition} is severe. He said that I try to remove as much as I could. Dr. also said that if we want a child, we need to go for an IVF, otherwise I never get pregnant. I was desperate and cried a lot for many days.

Then one day I was searching on web and found endo-resolved site. This site changes my life. It was hard to change diet because I like milk, cheese, sweets and wheat is my basic food (I am from India). I had my surgery in April 2007 and I have had change my diet in July 2008. I also start walk {but not in winters} and yoga. After that I never feel pain. Now I am 5 months pregnant without IVF.

My husband has been very supportive in all those months. He always helps me to change my diet and improve my health. When first time I went to my obstetrician he could not believe that I got pregnant without IVF. I wanted to say million thanks to the person who started this site. It gives me a new and pain free life. Thanks everyone,, and good luck.....A 

Jessenia Sanchez 
United States

Well I went through a long three years at the age of 13 to find out why I had so much pain. They kept telling me that is was constipation and nothing else. I went through a laparoscopy in 2006 and my doctor said I did not have endometriosis. Well a year later I went to another place and he read the tests results were wrong. I did have the disease and it just seem to get worst.

Because the same year I went through another surgery and I found out that I have Interstitial Cystitis that many women get due to Endometriosis, basically your bladder attacks itself. I am in so much pain in less than a year I have had 8 ovarian cysts, at one time 3 on one side 2 on the other. I was off birth control for one month and I got 5 cysts, so I need help out there because it seems to get worst and I was diagnosed in 2007, I am only 19 years old and I feel horrible. 

Amanda Johnson 
United States

Hello, Two months ago, I purchased the book for the Endometriosis Diet on this website. I took it very seriously as I needed to find some relief from my severe menstrual cramps. I was at the end of my rope. Doctor's told me that my cramps were normal. They told me I might have endometriosis, but that I should get pregnant to cure the disease.

The amount of ignorance out there had me feeling hopeless and overwhelmed. The diet book gave me the opportunity to put the healing back into my own hands. I started to feel like I had some control over my own body again.

Because I was feeling good, and I had energy from eating the healthy foods, I started to exercise and lost 10lbs. Exercising really helped my mood and kept me feeling positive. I thought maybe some of the excess estrogen was being stored in my fat cells. I wanted to minimise places for it to hide.

Through this, my husband and I have been TTC. We had been trying for 1.5 years with no luck. The second full month after following the Endometriosis Diet perfectly, I started my period - and to my amazement, I had bearable cramping - nothing like I'd been experiencing for the past two years. I couldn't believe it!

I didn't take any painkillers just to see if it could really be true and I was fine! Usually, I am in tears and popping painkillers every two hours. It's awful. This month, I am walking around, feeling fine, a little crampy but THESE are normal cramps.

I wanted to say thank you. I am healthier than I have ever been. I still eat organic chicken and some fish, but overall it has been very easy and enjoyable to follow this diet. I hope the healthier lifestyle will help with our infertility as much as it has helped with my pain. Thank you so much. Amanda Johnson * I also began drinking Noni juice and taking extra multivitamins, especially vitamins E, C, and B 

Stories Page 24