I am 29 years old and unlike many women whose stories I have read, I basically had normal periods with just a bit more pain than most people. I had my daughter at 24 and everything changed after this. I immediately could not take birth control periods, I would get sick and nauseated all the time. I did not worry to much, but I then started to experience aches in my side. I was diagnosed with gallbladder disease and 2 years later had this removed because my OB/GYN at the time said that gallbladder problems would be terrible in pregnancy, and my husband and I were wanting to try to have another child.
After trying for a year I had a HSG scan which came back normal. A few months later I started having debilitating cramps every month with no answers. My OB/GYN at the time was not helpful and said that she didn't think my symptoms were something she could help with, and treated me as if I was crazy and unable to deal with a little pain. I also was very concerned that she hadn't done more since my husband and I dealing with infertility for a year and a half and receiving no answers.
She did send me for an ultrasound which came back normal. I decided to get another opinion and went to a OB/GYN that had been recommended to me. He immediately scheduled me for laparoscopic surgery to see if I had endometriosis after I described the symptoms and infertility issues. I had my first surgery in January of 2009 and was told that I had one of the worst cases of endometriosis he had seen in his many years of practice.
I felt better, but then learned that my left tube was completely blocked and it was recommended that I do Lupron injections for 6 months. It was terrible, everything that you could have I have had. From the hot flashes, to the mood swings to the weight gain and lost of interest in my everyday life. After my third shot I almost passed out and less than a month later I started having terrible back aches and almost passed out at work.
After being moved from my family doctor to my OB/GYN I went through every test imaginable because my doctor did not believe the endometriosis could be back, especially since I was on Lupron. Finally, a month later I had my second Laparoscopic surgery on May 28, 2009. The endometriosis was back very aggressively and was now on my bladder and my colon had attached to my left ovary. He removed all the endometriosis he could and said if it came back my only option was a complete hysterectomy.
Now 2 weeks later the pain is back and now the doctors are saying I have sciatica in my back and don't think it is related to my endometriosis, however I believe it is and don't know what to do. I am having severe nausea and can hardly eat because I get sick every time I do. I do not know what I should do, my husband has been amazing and believes we should seek another opinion. I just do not know and wish I could hear from some others with similar options.
When I was 18 I was diagnosed with Endometriosis. I have had the pain associated with it since I was about 13 years of age. I have had 5 laparoscopy's to try to remove it but it didn't seem to do me much good. I had tried every kind of treatment there was from physical therapy to the lupron shot. In July of 2008, I had my uterus and cervix removed leaving my ovaries.
I was hoping my pain would get better after the hysterectomy, but unfortunately it did not. I started to grow cysts and still have a lot of distress. In January of 2009 I had another surgery to see what was going on. My left ovary was attached to my lower bowels and my left fallopian tube was twisted, so they had to be removed. Again, hoping I was going to start feeling better, I started to have bad symptoms. At the end of March 2009 I had to have a cyst removed from my right ovary.
Still I am not feeling better. I recently had an upper GI test done and it looks like they have found endometriosis around my colon. The Woman Care Clinic where I had gone referred me to the pain clinic in this area. We are playing around with different medications and nothing seems to be doing me any good. Every time I call they tell me they don't know what to say or there is nothing else they can do for me.
I have tried so hard not to give up hope but it seems that nobody can, or will help me, and I really don't want to have to deal with this pain for the rest of my life. It is interfering with a lot of different aspects in my life.
I have experienced severe cramps with my period since I was in high school. I also thought that this was "normal" and to just deal with it. In 2006 I became pregnant with my son. My pregnancy was normal but after delivery is when the problems began. My first menstrual cycle after having my son I had the worst pains to where I had to stay home for 2 days to recover. I thought that since I was nursing I wouldn't get my period until I stopped but that wasn't the case. The next few months weren't as bad as the first one but then came the irritable bowel symptoms.
I started to get pains all over my abdomen, loose bowels, nausea, heartburn, & indigestion. After seeing the GI doctor for 3 months, he noticed that this all happened on or around my period. So he referred me to the gynecologist. When I walked in and explained my symptoms, the doctor said that I had endometriosis. He sent me for an ultrasound which did come back with a 1cm cyst on my right ovary. He said that he wanted me to start on birth control or I could opt for laparoscopic surgery.
I said that I would try the pills first. Well the cyst grew from 1cm to 3cm in one month, then grew again to 7cm. So after the last ultrasound we scheduled surgery but it was a Laparotomy instead of laparoscopy. So in March of this year I had surgery, took 6 weeks off of work to recover, and I still don't feel good. He has since switched my birth control which has been causing me all sorts of problems (high blood pressure, elevated triglycerides, headaches, blurry eyes are just a few).
I have had a headache for the past month and I have decided that I am no longer taking these pills that are making me feel ill. I have an appointment with him again this week and I plan on talking to him about other options such as Mirena or a different type of birth control that won't give me such horrible symptoms. I hope to free myself of chemical pills someday and switch to an all naturally way of healing, but its very difficult with a 2yr old, working full time, and going to nursing school.
I've just been diagnosed with endometriosis after 5 years of agony! I was 9 when I started my periods and have had similar symptoms from then but the worst has been in the last 5 years! I have been mis-diagnosed me so many times over the last 5 years. I got told it was my appendix first, then it was a cyst on my ovaries. I got told I had IBS and my bowel wasn't working properly, then I got told it was my bladder and had to have the opening of my bladder stretched (which was quite painful.)
Then when I was still in suffering I was advised to go to a sexual health clinic to get tested because they thought I had a STI, when all that came back clear they said I must have pelvic inflammatory disease and had antibiotics to try and clear it up, but after 3 months constant antibiotics and the problem still there, they were lost at the cause of the symptoms. I was persistent and kept going in and out of hospital and seeing doctors. I started to get really depressed. I cannot cope with this much pain for the rest of my life I've been in a relationship for about the same time and I cannot bare to have sexual intercourse because I would scream in agony!
I cannot go to the toilet either way because it's agony which has led to many more problems because I would go 2 weeks without going to the toilet! At these times when the agony is that severe I cannot stand or sit for long periods of time, which means I cannot work or earn any money. So I am in a lot of trouble financially, this is just ruining my life.
I have to go back to hospital very soon hopefully and have it all removed bit it's so close to my tube from my kidneys to my bladder that there might be some complications but I cross my fingers and hope for the best! Reading some of your stories have made me feel a little better so thank you! Hope everyone’s endo is resolving and that they are living happy lives.
Firstly, I want to thank Carolyn for her book and this site, which are very precious indeed. If you happen to find mistakes in this letter, please be tolerant as my English is quite poor. I was diagnosed with advanced endometriosis in January 2009. I come from Poland and unfortunately in my country it is widely maintained that endometriosis is incurable.
However, I strongly believe that there is some way to combat endometriosis efficiently apart from pregnancy. I looked for help in various sources apart from conventional medicine; used supplements from Dead Sea and waxed my stomach with special cream from Dead Sea, which was a horrible mistake. My health gets worsened significantly.
Apart from growing cyst on my ovary, additional strange substance with small cysts started to appear in the Pouch of Douglas. Previously I drunk special herbs, but I felt horrible during it so I stopped. Sadly to say, in my country knowledge how to treat endometriosis is very poor and sometimes harms a lot of women.
On June the 24th I had Laparotomy. I got to know from my doctor that it will be laparoscopy, but in the hospital, they decided to change the way of conducting surgery. Lately I've read that Laparotomy is a bad idea in my case. Now I'm AFRAID THAT THEY MIGHT disturb my ovaries, or that adhesions will return quickly in the place of scars. My left ovary had been sewed.. I know that's not good at all.
I'm afraid of infertility so many thoughts and events.. However this website has brought a light to my world.. Lots of thanks for this.. Deep inside I know that I may regain my health like you did.. I would be grateful if you could answer me and write your opinion about Laparotomy and write to me some warm letter. Best Regards!!:):) Joanna
I’m 30 years old now and my endometriosis was diagnosed when I was 20, I had a laparoscopy then and the doctor told me straight out that is was the worse case he had ever seen in someone of my age, and that I would never be able to conceive naturally. I have been on various medications over the years, 3 times a day pills and still in constant agony. Twice I was rushed into hospital where I had to stay in for a few days while they pumped painkillers into me.
Anyway after 10 years I had had enough and after seeing yet another specialist who gave me lots of options, none of them good, I decided I wanted to at least try another way. I talked my doctor into giving me a year off the medication, with the promise that if the symptoms got too bad I would be straight back on the pills.
3 weeks after being pill free the symptoms started again, I was doubled over crying my eyes out, the pain was just searing through my body. In desperation I looked again on the net and found this website. I looked at the Endometriosis Diet and downloaded the recipe book. That night my boyfriend and I went out and brought what we needed and emptied the kitchen cupboards of all the food that was there.
The next morning we both (my boyfriend is so supportive) started the diet, we did it cold turkey; we thought it would be easier that way, rather than cutting things out gradually and if there were results it would be quicker. We were not disappointed. It’s been nearly 4 months now and for the last 2 months I have had NO pain, I even had a period and didn’t even get a single cramp. I was amazed, stunned in fact.
I also see an Osteopath who has felt around my tummy and when I first started going to him he said everything seemed very blocked up and tense. I visited him last week and he confirmed that there was no tenseness and no blockages that he could feel. I will never go back now, and we will continue this way of eating for the rest of our lives. I have NO pain, and am taking NO medication… I didn’t think I would ever be able to say that! I am so angry that none of the doctors ever mentioned changing my diet may help. Now I just want to shout it from the rooftops “don’t take the pills, try the diet instead” This could have saved me so much pain and heartache if I had known about it years ago.
The diet may 'look' a bit complicated and time consuming but once you get the hang of it, it’s fine, everything is really easy and soon you’ll be making up your own dishes. Any cravings I had for old food soon went, after about 2 weeks, Occasionally I will try something that I used to eat but to be honest it tastes disgusting now, my taste buds have changed now and will only accept quality ;o) The main thing I have to remember is to leave my beans to soak overnight. Now I don’t even have to think about it and can put a meal together really quickly. Thanks
I got diagnosed with endometriosis in 2007 when I was 17. My gyne doctor said I was youngest that he's ever diagnosed. I struggle everyday with mine but no one listens. the doctors think that I lie about the pain I go through, but they don’t see me when I'm crying at home. I'm waiting to go back to hospital in august because I've demanded another laparoscopy, you know within your self when something’s not right. But fingers crossed I can get one. Thank you for letting me read all your stories it helps to understand it more when you read someone else’s story and not just what the doctor says. Hope one day we will all be told there is a cure.
I wanted to share my story; as I see there is not another one like it. Almost 2 years ago I went to a surgeon to have a tubal ligation reversal. Before this surgery I had regular 28 day periods that lasted about 3 days. One month after the surgery I started to have pain in pelvic region. I was running a fever and losing weight. I had ct scan, ultra sound, vaginal ultrasound, and a countless number of urinary tests and blood work.
I have symptoms 3 weeks out of the month, and I am nauseated, tired, and cranky! My periods are debilitating and I have missed much work. I lose so much blood during my period that sometimes my arms, head and fingers feel tingly and I'm exhausted. I plan things around my period. I have been to the er 5 times in less than 2 years! One morning I woke up at 1:30 and I could hardly walk. My lower back and right side hurt so bad I was scared to death.
At the hospital they did a ct and gave me pain meds and sent me home. I was on my period so I know something was going on! My stomach looks like I am 3 months pregnant because it is bloated all the time. Now I have severe tail-bone pain and diarrhoea. I switched Gyno's a few months ago and she is finally going to do something about it.
I am having a laparoscopy done on Monday and a D&C. I have been researching endometriosis a lot and am certain I have it. No one wants to go the the doctor for a real medical diagnosis, but I would like to hear something besides it's not all in your head! I want my life back and if not having another baby means getting my health back then I will do it!
I am very hopeful that this is going to tell a lot. I also want to say that we know our body. I have been going to the doctor and explaining what my symptoms are. You have to be persistent on your body. It's all we get!
My senior year in high school (17 years old) I was diagnosed. I had painful periods my whole life. Started my menstrual cycle (with help of a endocrinologist because I was having terrible hormonal headaches) in 6th grade. Always heavy bleeding and horrible debilitating cramps. I had one laparoscopy done (which confirmed I had endometriosis) and was put on the depo provera shot to stop my periods.
I gained 30 lbs! Was not helping with pain, so I tried Lupron. BIGGEST MISTAKE OF MY LIFE. There are horrible side effects not even other drugs can manage them. I tried EVERYTHING! I DO NOT RECOMMEND THIS MEDICATION TO ANYONE NO MATTER WHAT! I then had a second surgery to remove the lesions ( I had the chocolate cyst, adhesions all over my pelvic wall, but none on any reproductive parts fortunately). I have currently been on Yaz for 2 1/2 years as treatment.
My doctor has completely stopped my menstrual cycles which has alleviated a great deal of pain. Every now and then I have a flare up, but nothing compared to before! I am suffering from chronic fatigue, and am seeking medical advice for it so I can finish college. No matter how much I sleep, I am always extremely exhausted. There are a handful of other things I have tried (diets, herbs, supplements, exercises, holistic medicine, etc) . It has been a long road to recovery but I am out of pain for the most part, and wish the best to you all. There IS help, DO NOT give up. Increase awareness!
Hi I am 42,and lucky enough to have had two wonderful children, I am 10 weeks post op after having a complete LAVH as had severe endometriosis, had 3 surgeries prior to this to burn of endometriosis but to no avail. Then found my uterus stuck to my bowel and ovaries were in a bad way, covered in cysts, also found fibriods.
Scar tissue a major problem as so much of it. Anyhow felt great up until last week when my pain has started to return and so has my nausea not a good sign. So please if you are thinking of a hysterectomy please be aware that your pain may well return if endo is left behind. Please get a second opinion so you are aware of all the risks.Thinking of u all Julie x
Trinidad and Tobago
Hi, I am 29 years old and I was diagnosed with endometriosis last October. On Saturday 18th July, I did a laparoscopy which seems to have been successful. The doctor told me that he was able to remove the cyst from my ovaries. He also told me that my tubes were great and that he was really hopeful. My husband of 4 years and I have been trying to have a baby for the past two years and when nothing happened I went to see a doctor.
I only started getting menstrual pains recently and so unlike many, I generally had painless periods growing up. After doing lots of research about the disease and doctors, I visited an IVF specialist in my country, and with lots of prayer and faith in God, I did the operation. I am recovering now after 4 days and generally feel well. I have to go back to the doctor on Saturday to get a follow up. I wish all of you the best and I do suggest that you try to find an experienced specialist. Also, prayer is very essential and staying positive.
Stories Page 27